Highlights from Dutch Lipedema Day Conference – Part 1

June 15, 2015, 10:39 am

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By Tatjana van der Krabben

On May 30, 2015 I attended the 5^th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog I will point out some interesting facts and figures I picked up that day.

The first lecture was by dr. Veraart, dermatologist at the Academic Hospital of Maastricht, the Netherlands. At lightning speed he covered some interesting facts and figures:

·         Lipedema is very uncommon in South East Asia. At the same time most cases are reported in the western world.

This I’ve heard before. Estimates about the percentage or number of women affected worldwide vary and they vary for a reason. 11% of all women across the globe most likely is NOT accurate. Careful what you quote out there.

·         There is no hard classification to describe lipedema.

75 years of lipedema as a known condition and we don’t even have that! Dr. Veraart called the number of parameters ‘limited’. In plain English that would be something like: there are only so many (known) symptoms linked to lipedema.

·         Lipedema often coincides with: venous insufficiency, flat feet, obesity and lymphatic insufficiency.

·         Other types of fat depositions do exist. Abnormal fat deposits on the legs is not necessarily lipedema.

Dr. Veraart mentioned in this context Madelung, lipodystrophy and lipoatrophica semicularis. Here’s the catch: he said sometimes abnormal fat deposits on the legs are actually from a different disorder.

·         The cause of lipedema is unknown.

This is where it got really interesting, because he did mention the latest theories. Dr. Mortimer is looking into the genetic aspects and studies families. A genetic mutation (Pit 1) has been found in a family, but in men. For this reason dr. Veraart didn’t think this was the genetic insight that would explain lipedema.

What is known is that our fat cells look irregular, all inflamed and ‘drenched with unrest’. Present theories evolve around an interaction between capillaries, fat and muscles. There’s also a theory where the endothelial cellsplay a central part; where they (want to) look into the growth factor of these cells and the effect of hormones.

He also speculated about a possible neurogenic effect - you’ll have to excuse me for my superficial account, but he went at lightning speed with medical terms and all. Suffice it to say that there are more in-depth theories available. Stuff that doesn’t involve nagging about calories and the effect of lymphedema protocols on lipedema patients, to name but a thing.

So, there are theories. Now for the hard part. Dr. Veraart was asked what was keeping ‘them’ from actually researching these theories. Money. That’s what keeping them. Most funds go to oncology and cardio-vascular research. He implied patient initiative would be required to get things moving.

The second lecture was by Ms. Dudek, psychologist, psychotherapist and dietician at the university of Warsaw. You may remember her questionnaire being shared on the forums? It evolved around the quality of life in women with lipedema.

For us it doesn’t serve much purpose to rehash that it’s hardly uplifting to deal with an unrecognized and painful condition, rarely diagnosed and mostly fairly late in life and difficult to control, too. However, she did have a few useful insights and points, from the patient’s perspective.

·         Lipedema affects all aspects of functioning, including avoiding treatment, thinking nothing would help anyway. Many of us pick up unhealthy eating habits in the broadest sense: overeating, or eating too little, not eating in company, eating disorders.

·         Dieting can lead to overeating.

She mentioned in this context the Minnesota experiment, an (old) semi-starvation experiment.

·         Social isolation she considers to be more harmful than poor diet and lack of exercise.

·         Which does help in coping with lipedema is psychological flexibility, which – and this interesting – can be learned to an extent.

As for coping with a new diagnosis she gave these pointers:

·         Give yourself time, time to experience that mixture of relief and grief.

·         Be curious and active.

·         Accept what you cannot change, but focus on what you can control.

·         Love yourself – behave towards yourself as if you love yourself.

·         Build a support network.

·         Ask for help.  

As for diet: work on long-term dietary changes, consider mindful eating and use a 80:20 ratio in the healthy food choices you make. Paraphrased I would say the idea behind it is to not go overboard, pick something you can stick with and work with realistic goals.

This is part 1 – more to follow!

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Highlights from Dutch Lipedema Day Conference – Part 2

June 19, 2015, 10:50 am

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By Tatjana van der Krabben

On May 30, 2015 I attended the 5^th Dutch Lipedema Day in the lovely southern part of the Netherlands. It’s impossible to cover everything I heard and learned that day. In this blog - part 2 - I will point out some interesting facts and figures I picked up that day.

We had a little bad luck: dr. Rapprich had had to cancel. Although famous for his liposuction treatments, he would have covered something entirely different: AquaCycling. He would have presented the first results of a study to include AquaCycling as part of the therapeutic concept for lipedema. I don’t know whether or not certain modifications were made to accommodate lipedema patients during the study, but this is aqua cycling. To be continued, then?

Ms. Smeets-Taubitz, a homeopath and health therapist (for lack of a better translation for ‘Heilpraktikerin’) delivered a very interesting lecture about infrared therapy. In this concept not to be mistaken for infrared sauna. Using specifically the infrared cabins of Physiotherm, lipedema patients were only exposed to temperatures between 27-37˚C (80.6-98.6˚F), therefore no higher than body temperature.

The warmth was directed at the back, to be absorbed by the bloodstream and to affect the lymph. The bloodstream is to spread the warmth over the entire body. It is to effect improved circulation, have a favorable effect on the organs, muscles, connective tissue and skin, potentially reduce pain, improve metabolism and have a favorable effect on the immune system. Afterwards either increased sweating or more frequent urination is reported, as well as weight loss by some over the course of 5 weeks.

Interesting detail was that Ms. Smeets-Taubitz referred to women sweating who were ‘normally practically unable to work up a sweat’. She had observed this more often in lipedema patients and this is something many of us have mentioned on forum, too.

Ms. Smeets-Taubitz may have only worked with a small group, but this has been applied as a therapy for lipedema patients in two German clinics already for some time.

Drs. Schift, cosmetic surgeon, went over the history of liposuction.
In 1974 Georgio Fischer started with fat removal in Italy.

In 1980 Yves Gerard Illouz and Pierre Fournier continued with fat removal in France, which drs. Schift described as still a bloody affair.

In 1987 dr. Jeffrey Klein, a dermatologist from the USA invented tumescent local anesthesia. This was a genuine breakthrough, reducing risks greatly. Dr. Klein’s Tumescent technique is still perceived as a handbook on the subject. Today’s irony being that American doctors now travel to Germany to learn the ropes.

In 1990 dr. Gerhard Sattler introduced tumescent liposuction in Germany. He perfected the technique and worked towards the extraction of larger amounts of fat. Along the way the cannulas have gotten significantly smaller as well.

With tumescent liposuction a fluid is being injected first. Tumescent fluid contains physiologic saline, lidocaine, adrenalin and bicarbonate.
The adrenalin helps the blood vessels contract to avoid a lot of blood loss. The bicarbonate reduces the acidity, making the infusing procedure less painful/stingy. The fat holds the lidocaine, releasing is slowly, which allows for the application of high doses.
However, the body being able to break it down is also very important. This can be hindered by medication like anti-depressants and certain pain killers.

Infusing of this tumescent fluid is not unlimited, but related to body weight: 35-50 mg per kilogram of body weight – if I noted correctly.

Upon infiltration the skin swells and becomes pale, from the contracted blood vessels. Then you need to wait for the anesthetic to take full effect. Drs. Schift described the infiltrated and therefore tense and swollen tissue as more easy to work with, providing clear definition.  

He also tackled the debate among patients on how much was extracted and how come it varies, when they compare their cases. Well, it depends on the person and how much tumescent solution can be used safely for that person. So you honestly can’t compare notes with other patients.

Tumescent liposuction comes in many variations. Initially it was done entirely manually, but this is tiring. Then came: UAL (ultrasound-assisted liposuction), PAL (power-assisted liposuction), WAL (water-assisted liposuction) and LAL (laser-assisted liposuction), not necessarily in that order.

All methods were designed to make the procedure easier, for both the surgeon and the patients and to improve results.
They all have their own quirks. Drs. Schift mentioned the risk of burns with UAL, although it helps loosen the fat, and the difficulty with anesthesia in WAL, the fluid being infused not prior but during the procedure and therefore not being able to put the anesthetic properties to full use and requiring additional anesthesia. Drs. Schift himself favors LAL, which he says is primarily used to burns through the connective tissue and helps the skin contract to avoid pleas and folds in the skin after liposuction.

Drs. Schift also stated that despite large volumes are being extracted, this is, due to the subcutaneous friction, an active procedure for skin, stimulating the skin to retract. Whereas natural weight loss is more passive for the skin and will show sagging skin more readily.

And then…bring on the fireworks! Dr. Cornely, dermatologist and phlebologist, but more so known for his liposuction treatments, covered lipedema in the arms and ‘treated’ us to some graphic, but informational footage.

On forum most object to the claim that lipedema only sometimes occurs in the arms. Dr. Cornely argued 80-90% of the patients he saw have it in the arms as well. Other doctors have come up with percentages of around 30% of the patients, but he disagrees. He said the lower arms are often skipped with liposuction because of the concentration of lymph vessels in the lower arms. He, however, didn’t perceive this as a reason to not treat the lower arms and showed us footage of him doing so.

He also proposes to change the name of liposuction in lipedema to lymphologic liposculpture to take some distance from esthetic surgery, since liposuction for lipedema is not (necessarily) about esthetics.

Then there was an interesting debate on the long term effects of liposuction. Drs. Schift presented 2 cases with very good long term results, but said it was difficult to follow patients (time, cost, developing an objective standard to compare data), but that it would be useful in order to determine the long term effect. Dr. Cornely, however, spoke of ‘curing’ lipedema through liposuction, which statement was also welcomed by another liposuction doctor present.

Weeeeell, that sparked a lot debate and triggered many critical questions. Mind you – the physiotherapists present were for the better part trained in conservative treatment options. So watching liposuction of arms and fingers (!) in action was way out of the box for many, that, and the cure claim. As for the patients: we all fear false hope, don’t we?
I wouldn’t know about treating the lower arms myself. If that is possible, safely, it would be of use for many, since many do have lipedema in the arms. As for a cure? In case you’re not a regular reader of this blog: we’re open to liposuction as a treatment option (been there, done that, no regrets), but we don’t refer to it as a cure. Sadly, there is no known cure for lipedema at this point.

Those who attended the conference may miss 2 lectures in this overview, or three actually. Busted. One was on food/diet, by someone who admitted she had little or no specific knowledge of lipedema. Although touching upon relevant issues such as the quality of food and looking more so at nutrition and its effect on the body than calories, it was not lipedema-specific. Being flooded with (contradicting) information on this subject as it is, I thought it better to skip coverage on this one.
The other being about skin therapy and Ayurveda, more specifically a combination of endermology, Ayurvedic supplements, breathing techniques and exercise. I’m not saying it does nothing, but it described only one case of a lady who (also) had venous insufficiency and therefore had a strong edema component. The before and after pictures were great – she lost inches - but edema is easier to reduce than pure lipedema. At this point the person presenting the findings could not confirm whether or not it was (mostly) edema management and what did what in the treatment program. So, I’m giving it a mention, but am not getting into the details.

A third lecture not covered here did not address lipedema, but body language and therefore doesn’t fit the scope of this blog. Plus, I played hooky with that one – yes, bad me.

The thing with lipedema diets

July 25, 2015, 9:59 am

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By Tatjana van der Krabben

Recently I read a blog by The Well-Rounded Mama with a very accessible overview of lipedema symptoms. Something in her introduction resounded with me:

"However, when I have tried to research the condition, I've been turned off by many lipedema websites. Some pay lip service to being size-friendly but when you dig deeper, there is a whole lot of food neuroses and weight-loss rhetoric"– The Well-Rounded Mama

She was referring to websites, but truthfully you see this in support groups as well. We say you can’t diet it off and then talk about diet, recommend diet, compare diets. What is that?

We are all size-conscious

Society demands we are size-conscious. We were raised to be. Our doctors insist we are, because supposedly our size defines our health. Selected role models on TV and in films and magazines rub it in. Clothes stores pick sides and stock for either the slim or the plus-size, hardly ever for both. Even when they do, they direct you to separate floors.

You’re in or you’re out. And if you’re out, you can always conform by losing weight: this is popular belief and sadly, it doesn’t apply to reality. Not to lipedema, not to lymphedema, not to slow metabolism and…and…and… Not to mention the fact women are still largely being judged on looks. We evaluate what female role models outside the beauty industry wear or their new haircut – like that really matters or as if we would scrutinize the looks of their male counterparts like that.

Is talk of diet wrong?

Not all diet (talk) is bad, I think. Because although we tend to link the word ‘diet’ to ‘weight loss’, there’s more to it.
This is what the dictionary has to say on the subject (source: thefreedictionary.com):

diet   (dī′ĭt)

n.

1.  The usual food and drink of a person or animal.

2.  A regulated selection of foods, as for medical reasons or cosmetic weight loss.

3.  Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.

‘The usual food and drink of a person’. That doesn’t sound so bad. We all got to eat, and drink for that matter.
‘A regulated selection of foods, as for medical reasons’. This could be us. This is how I see ‘diet’. Not some thing you deal with for a couple of weeks or months in attempt to reach some goal and leave it, but rather a lifestyle.

Managing lipedema through diet

‘A regulated selection of foods, as for medical reasons’. I see lipedema diet as something like a diet for diabetes or a slow working thyroid. It’s not like you can cure diabetes by following a diet or fix that thyroid, but it does help you manage the condition.

Manage, how? Through Lipese we get a lot of questions regarding diet and specifically what to eat to lose that dreaded lipedema fat. We always answer the same: change your diet and you won’t lose weight per se. With an underlying medical condition that affects your weight it definitely won’t be easy and perhaps it won’t happen at all. This is a disappointing message and not easy to convey, but this is where we currently are with lipedema treatment.

Is there still a point to it, then? What else would there be to ‘manage’? There’s mobility and strength. You can’t exercise and build muscle without proper nutrition. Trying to stop gaining can be a thing. Also very valid: pain management. By attempting to reduce inflammation, you could be able to reduce pain and become less prone to swelling.

Perhaps, trying, attempting, could: we’re all reaching. Preferably for the stars. But it’s far from easy. It requires getting to know your body and figuring out a diet plan that is right for YOU. For some stupid reason (venting some personal frustration here) we can’t make a list of do’s and don’ts we could ALL benefit from. Sadly, with lipedema it doesn’t work like with diabetes, where you can measure a concrete value and adjust accordingly then and there (that’s a bit simplified, of course). Yes, (contradicting) food lists do exist for lipedema, but it doesn’t work for all. Also, there is no research regarding diet or metabolism in lipedema.

Guess what happens next? We swap…dietary theories and suggestions.

Just as long it comes from a good heart and a healthy curiosity, I personally don’t see the harm. Have you found something that works for you? Congratulations! But be aware that the key to your success is yours and doesn’t necessarily work for others. Share & care. We are all in this lipedema boat together.

The Summer My Elm Trees Died

August 18, 2015, 11:48 pm

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by Maggie McCarey

    In a few days, our summer’s end party will fill our garden and the street beyond with live music, dancing, and firelight. The friends of individual family members, forever friends and new friends, from every generation, will come together to celebrate this less than stellar season of fertility and abundance. This will  be the last year that my two elm trees will be with us for this celebration. They are dying. They have stretched over our garden, intertwined and misshapen, since we moved here 15 tears ago. They have protected four generations of my kin living below them. Known as Isis and Osiris in our neighborhood, they cleave, the branch of one supporting the other faithfully until  they have created a celtic love knot so intricate that no human could trace where one begins and the other ends. Their roots are visible 2 or 3 feet above ground, and twisted together like weaver’s filament, knotted and secure, stronger united against city life.

    Their roots bear the stripes and scars of living in a finite world. This is life. But, the horror of their passing needlessly now is the horror of my life, too. Watching them drop pale yellow leaves to the ground at the slightest touch of wind or breath is so reminiscent of lipedema pain at the slightest touch or bend of the leg. They are dying of Dutch Elm Disease (DED). DED was first named in 1910 when it ravaged the forests of Holland. It is estimated that a million elms have died in Britain alone, and there are only 8,000 left in the USA. “No cure.” My elms are dying this summer because there is no cure for DED. Drones have been invented, as have sophisticated weapons systems that can hit a village from a target on a screen, and a spaceship is being readied to explore the heavens for a new planet capable of sustaining human life.  But no aggressive plan is in place to save my elms from being toppled by a beetle in one season. 

     Lack of interest. That’s what the elm trees are dying of. Even the cause is known. When their immune system recognizes that their outer layer is breached, elms send out too much protective sap to protect their inner core. Beetles don’t actually do them in. Fungus rides in through the sap and gains entrance to the inner chambers: the root system.  Spaceships, manned by fungus, looking for a hospitable environment to ravage as long as it can survive before finding another host is what they are dying of.  And I am sick caused by lack of interest as well. That’s what my daughter, who drags her leg the way I did before I could no longer walk, is dying of. That’s what my granddaughter who has been on strenuous diets since third grade to save her from lipedema is dying of. And, that’s what my two great grandchildren, who are already allergic to the food that will be foisted upon them against our will, are also already dying of….and, of course, that’s what many generations of women have already died from. Lack of interest.

     There is good news. Some trees survive. Those who are invaded in late summer when dormancy protects them from starving to death can live. Not all of you will lose your mobility. Some of you will lumber and some of you will dance to the finish line.  Better news would be a systemic approach to curing DED (and lipedema). No finish line.  Best news would be  the appearance of a metaphor so illuminating that trees and women would have their rightful place in the world’s esteem.

        Yesterday was my birthday.  Instead of a new outfit on my special day, I bought a “festive”  transport mobility chair so that my family would be less encumbered by my illness at the Saratoga races among thousands of people on foot.  Ah, the fallen matriarch.  How I fight the demons to create lasting memories with my tribe. I walked so tall and covered my insecurities with a head held high, big legs and all, as long as I could walk.  Now, I face them without the comfort of illusion, others or mine.  

     My daughter, Stefanie’s legacy to the world is sheltering lost and unwanted children beneath her wing. She brought Estelle into our family last year. Estelle and I have the same  birthday so I shared mine with her.  Her first horse race was at the fence, and she won big every race! She stopped in to see me today. At one point, Estelle said, “This was the best birthday of my life.”

    I said, “It was one of my worst. It is difficult to be the one in the wheel chair. ” (Ignore my leaves falling pale and yellow around my body.)

     “Are you kidding, Grams? You just pulled yourself right up from the fence and stood for every race with the rest of us.  That’s what I will always remember about you yesterday. That’s what I am going to do, too, when I am old.”  Ha, there it was, that wonderful inevitable ray of light.  I still have value as do my elms who might be giving us clues to how we need to slow down lipedema. The circle of life trumped lipedema. I and my trees still have value and purpose regardless of our circumstances.  Next Saturday, when people celebrate summer, the elms and I will be among them, blessed in this season to have one last summer together.

     A footnote: I read this blog to my husband last night and it gave him the freedom to talk about how bothered he was by the chair at Saratoga, a conversation he would never have initiated. He said: I am so used to you being by my side, I missed you. “But,“I have figured out a solution.  The next time we go to Saratoga, I am going to ride in a wheel chair next to you.”

     I snickered. “Who is going to push you?”

     He waved my comment away. “I don’t care how it happens. We will hire someone. But that’s how it's going down.”
 

                   Isis and Osiris

Low impact exercise – Aqua Lymphatic Therapy & Rebounding

August 31, 2015, 4:07 am

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By Tatjana van der Krabben

Recently an invitation landed in my inbox for a meeting called ‘Lipedema on the move’, specifically going into suitable exercise options with the opportunity to try these under supervision. The timing was impeccable. I had just cancelled my gym membership, because both going there and the training itself had become a bit of a burden. Draining, really, when I have zero energy to spare. Well, at least not to toss it out the window. But what then? I dowant to exercise. What is safe? Where to begin? This clinic was an excellent starting point. Plus, many of my lipedema friends would be there. What more reasons do you need to go?!

Divided into small groups we tried Aqua Lymphatic Therapy (ALT) and rebounding on a mini trampoline. We had a lot of fun, which meant trouble for our instructors, but I think I managed to take in most for my and your benefit.

Aqua Lymphatic Therapy

ALT is very gentle. It doesn’t even come close to regular aquatic exercise. Like manual lymphatic drainage is a very gentle massage to get the lymph moving, so are these exercises very easy and slow-paced. Benefitting from the additional pressure of the water, we did exercises in comfortably warm water in which – most of us – could properly stand.

We started out with self-lymphatic drainage (SLD) and deep breathing to specifically aid lymphatic flow. After that we did very easy exercises to very relaxed music to enforce that easy pace. We walked in water, added alternately extending our arms and gently turned up the pace. The walking was paired with making a swimming motion one arm at the time, first palm down, then palm up. Little by little the pace went up. We strutted in the water, hands in our sides and circled the pool with small jumps.

The more energetic part we did with pool noodles. We used the noodles for stability and support while turning sideways, for instance. We also placed it between our legs to push ourselves higher in the water and make cycling motions (this is Holland people, we Dutch cycle everywhere) and after that horse-like jumps. Giggles all around!

Then the pace went down again. We made the water whirl around us with our hands, adding to the massaging effect of water and did more elaborate SLD. It’s quite impossible to explain this properly without showing it. A very sketchy impression: we massaged ourselves by stroking the skin from just beneath the buttock, up your side right to your armpit where we finished by making a scoop-like motion to pump the lymph. We repeated this twice and then started a little lower, mid upper leg, still from the back and then repeated the same procedure from the knee up, doing each stretch three times. We then massaged the back of our knees. We finished with a type of jumping jacks while pressing down on the groin area where the lymph nodes are. Then massaging the little dimple at the clavicles and deep breathing. That little dimple matters: it’s where all lymphatic massage begins and ends.

I must say, the total package got the lymph moving all right. For lack of time one side got more attention than the other. We all expressed our right side was feeling significantly lighter than our untreated left side. I was surprised the effect was this strong!

Rebounding

The little trampolines we used for rebounding are smooth in use because they use elastic bands for the bounce, not so much a metal coiled spring. The idea behind it is that it’s the easiest on the knees. Also important: these can support quite some weight and the elastic bands come in different strengths. The deeper the bounce (no jumping!) the bigger the effect on the lymph. This effect has recently been tested with a lymphoscintigraphy. The dye, injected between the toes, was administered twice: once prior to similar floor exercises and once more, after clearing all the residual dye from the first test by MLD, to measure again with rebounding. Judging by the path of the dye, the lymph was moving twice as fast when doing the same exercise/motions on the mini trampoline. Only one test subject, yes, but it gives you an idea.

I feared a little for my poor sense of balance, but I didn’t even need a support, just a little hand getting on and off the mini trampoline. We received instruction on the value of a nice, deep bounce, like described above, the proper posture and some basic moves. Best part: it’s not only good for you, it’s fun! I’m a sucker for exercise that is also fun. We all know that sticking with something is the hard part. The element of fun is a huge help in this.

Got a trampoline that matched my dress, uhuh!

A sturdy, quality trampoline like this is costly. I’m sold and getting one, but I’m well aware it’s not for everyone. So I was super pleased to hear NLNet, the Dutch lymphedema and lipedema foundation and the driving force behind this afternoon of exercise, will also be making YouTube clips with simple exercises you can do around the house. Accessible and safe, because the clips will be made by people with knowledge of lipedema. I will keep you posted on that development.

All in all it was a great afternoon. I met old friends and made a few new ones. For some it was the first time in years they got into a pool. It was a great idea to have this privacy and strictly be among ourselves with knowledgeable therapists. Not only that, the lymph actually started moving and I could tell the difference until well into the following day, despite driving back for over an hour after the training. I would say that this type of exercise is really worth looking into.

Do note that the primary focus of these exercises is to keep the lymph flowing and maintain body strength. This offers no promise of weight-loss. As discussed that afternoon healthy fat cells may be present in your legs, which could shrink, but there's no telling in advance whether a reduced circumference of your legs is feasible through exercise and/or a change of diet in your particular case.

Be healthy & be safe. Consult your doctor and/or therapist first if you want to make changes in your exercise regime and/or diet.

Raising awareness for lipedema – a tale with trolls & fat bias

September 20, 2015, 1:27 am

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By Tatjana van der Krabben

One time I was interviewed by a journalist of one the biggest women’s magazines in my country and had an awesome interview with her over the phone about my lipedema life. Despite the happy tone I thankfully requested insight prior to publication. Her draft said I had liposuction to fit into a size 10 again. I was also depicted as depressed, fearful and poorly informed about liposuction when I had my first surgery.

My heart sank. Our book Lipedema – Help Hope Healing had just been published and I had a request out for a (partial) tax refund on liposuction treatments, still to be evaluated. My actual stand: I chose liposuction to improve mobility and reduce pain. This journalist was undermining my credibility and reputation. It took filing a complaint with her superiors for her to admit she had twisted my words. In the end a revised and approved article appeared in the magazine. Feedback was positive. I was ‘lucky’.

As more and more ladies step forward to raise awareness for lipedema I also see more of the good and bad of (social) media. Raising awareness is awesome and valuable, but it doesn’t hurt to think beforehand how far you want to take this and what to do with the haters out there. Please excuse the negative undertone, but it’s better to be safe than sorry with today’s online aftermath of all things public.

Raising lipedema awareness & privacy

Lipedema is about the limbs, but your legs run all the way up to your groin/underwear. Images of our legs serve an educational purpose, but images don’t need to include your face per se. I made the decision to never post images of my entire legs, because I don’t want my exposed legs to be the first thing people see when they google me. This may sound a little shallow to some, but I also have a business to run that has nothing to do with lipedema. If it’s just about showing what lipedema looks like, anonymous images are just as functional. That said, we all know that showing a person behind a condition has a lot more impact than an image of an anonymous body part. If it’s a conscious decision to reveal your legs in the media or on social media, I applaud your bravery and your support for the cause.

It’s not just about the hint of nudity that can be involved. Lipedema has a profound impact on our lives or has had that impact at some point. You don’t have to disclose every little detail in interviews, blogs or campaigns. It’s o.k. to draw a line somewhere, a line that suits you.

Just remember: what goes online, remains online. Think about what you post or disclose and what could resurface even years down the line. Stay in control of the information about you online, best you can. That’s hard enough as it is.

Explore what you are signing up for

Are you super proud of your lipedema curves? Congratulations! You wouldn’t want to appear on a show where they’re conveying the message you should be miserable and are in desperate need of an intervention. Or vice versa.

It can be more subtle than that. Poorly produced (social) media campaigns can be equally problematic. This by undermining your credibility and/or reputation and inviting a lot of negative feedback, which can take away from your efforts to support the cause.

Despite the saying There is no bad press, implying all media attention can be used to your advantage, there is such a thing as bad press. Some media attention can be harmful, either for the cause or for you personally. So look into this beforehand and stay alert during interviews or the planning and production phase of projects. You don’t have to (fully) answer any and all questions or participate in anything you’re asked to join in on.

Request insight prior to publication

Where I figured 4 rounds of uncovered surgery to seek improvement for a painful condition was enough drama to interest readers, the journalist I once dealt with was of a different opinion. The problem started after the interview, where the journalist decided to fill in some blanks based on quotes other people had made online. I could never have guessed this during the interview. Editing, interpretation, an editor demanding a different angle in retrospect: it can all affect the item, either good or bad. So, if applicable, ask to see a written piece prior to publication.

Sometimes your hands are tied. TV, for instance is different. We’re not Julia Roberts and can make only so many demands. It’s also not always feasible. I once got a last minute call from a newspaper if I was willing to do a quick interview and headshot to fill a blank space on a health-themed page. In that case deadline issues got in the way, but for a magazine, for instance, the timeframe generally allows for it. If not offered the option, ask. 

Don’t feed the trolls

Trolls, haters, self-appointed gurus and experts: be prepared to find all of them to respond to your story once it goes public. They become particularly active at the first sign of (assumed) weakness or a(n implied) request for help. With lipedema, fueled mostly by fat bias, they will happily tell you what you’ve been doing wrong all along, or that you’re full of it and simply overeat. Arguing with these anonymous types or those so convinced they are right is pointless. They won’t change their minds. So my advice here is: don’t feed the trolls by engaging with them.

SEO - Boosting the right things online for the cause

Ignoring trolls is not just about being the bigger person. Not feeding the trolls is also about a little thing called ‘search engine optimization’. Search engines like Google, but also social media try to determine what the public wants to see. They release algorithms to do the math for them and determine what to show on social media timelines or what should be shown in what order in search results. Typical ways to add weight to an issue is to aim for a lot of responses and shared messages on the subject. When something goes ‘viral’, you hit the publicity jackpot and the message will spread across different media and social media platforms effortlessly. On a smaller scale these principles also apply. For instance, when you respond to or like a friend’s post on Facebook, it lingers a little longer in your newsfeed, giving more people the opportunity to reply.

This is where the trolls and the know-it-alls come in. When feeding the trolls by engaging in debate, you grow and enhance their platform. Their messages will only spread further and stay on top longer. They love that. They want you to respond, for them. If it’s toxic, leave it. It won’t help you or the cause you fight for. Then again, if you have a good thing going on social media, milk it! There’s also the good, of course.

So what to do with a good message and trolls responding to it? You can still show support and boost the message by responding to the message itself or replying to positive reactions to it. That way you still don’t feed the troll. Lack of engagement will make them lose interest.

Raising awareness can be fun! I met some amazing people and made friends that way. Raising awareness is a slow process and it takes heaps of exposure, but we can do this. It just doesn’t hurt to look out for yourself in the process.

The Relationship between Cortisol and Estrogen - Part 3

October 22, 2015, 12:45 am

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Cortisol, Estrogen and Leptin: Is this the Party to Whom I am Speaking?

By Maggie McCarey

Life is a system engineered with such intelligence that humankind has barely grasped at the most elementary components of the body perfect and thus has contrived only the most remedial means of healing it. Five hundred years of allopathic medicine have remained essentially the same: cut the diseased area out if you can live without it, or if you have two of them, you have one to spare. Any  “diseased” organ is fair game:  tonsils, appendix, adenoids, gallbladder, uterus, kidney, lung, connectors in the frontal lobe of the brain. Or, they have treated the area of the body that can be seen via x-ray etc. with chemicals. 

 

Only in the last few years have researchers begun to see the body as a hubbub of activity with little messengers, peptides, neurotransmitters, etc., passing information from one organ to the next—billions of messages a second.

The researchers have also discovered that marauders known as bacteria and viruses attempt to trick, duplicate and replicate the body’s messengers in order to survive, which scrambles their ability to communicate and send forth proper messages. Worse yet, researchers have discovered that marauders  change DNA forward many generations causing major disruption in the body perfect, corrupting its memory and causing it to lose its ability to remain viable.

Slowly but surely, these discoveries move allopathic medicine in a new direction.  You will read more and more that researchers are looking for signals (messengers) which are stuck, failed, being held hostage or intercepted in diagnosing and curing disease.  In the very near future, identifying the “break” in the cable and repairing it, will become the foundation of good medicine.
If about now you are visualizing the human body as the beleaguered  Enterprise on a Star Trek episode, you have come to a greater understanding of living matter and its inter-dependent connectedness: your body perfect, a macrocosm of the universe.

So from now on, we are looking for the damaged signal,  the downed messenger, or the replicated virus posing as a messenger, and we are often looking for it in a gene marker in adipose. Yes, the organ that only a few years ago was called fat and turns out to be our first line of defense against illness. For example, adipocytes  within adipose secrete various factors known to play a role in immunological responses, vascular diseases and appetite regulation. One of those factors is leptin, a peptide hormone primarily made and secreted by mature adipocytes. It has various biological activities, including effects on appetite, food intake and body weight regulation, fertility, reproduction and hematopoiesis. (Source: Niemelä et al 2008)

We have much to learn about cortisol and estrogen through leptin. It is the hormone that keeps us from starving to death, and it teams up with estrogen in the brain at the hypothalamus. There, estrogen and leptin, perform their duties together, according to Geo Q, Horvath T. of Yale University, in a chewy paper entitled: Crosstalk BetweenEstrogen and Leptin Signaling in the Hypothalamus. In short, estrogen and leptin hook up in the brain and work together to keep a body balanced between starvation and unstoppable weight gain.  Apparently, our bodies didn’t get the message.

What happens if  you don’t have a high enough leptin level?

“…originally leptin was thought to exist to prevent obesity; this turns out to be incorrect. Rather, leptin exists to prevent starvation and the fall in leptin is what coordinates most of the bad things that happen on a diet. Your metabolic rate falls, dropping T3 (thyroid hormone) , increasing cortisol, increased appetite…”

All of these processes are adaptive to the fall in leptin when you diet. Did you catch that? Diets increase cortisol?  We now have cortisol and estrogen connected to leptin in the hypothalamus. Has this journey lead us to a cause of lipedema?  Probably not, but its better information with more potential to change our situation than the doctor’s perfunctory 1000 calories sheet handed to you for decades.

Let me underscore the above quote. “Rather, leptin exists to prevent starvation and the fall in leptin is what coordinates most of the bad things that happen on a diet.” Your metabolic rate falls, dropping T3 (thyroid hormone, increasing cortisol, increased appetite…” 

When you diet, you create an imbalance that increases cortisol which I speculate messes with the intricate language shared between estrogen and leptin. You wage war against against your own army of messengers.  To make matters worse, when the stomach shrinks from dieting,  compromised leptin is met in the stomach lining by ghrelin, a peptide hormone also known as the “hunger hormone” whose job is to maintain body weight.  Leptin  avoids starvation and is supported by friend ghrelin who intensifies the feeling of hunger when you diet for any length of time. You can observe this yourself when your body refuses to yield another pound.

How many times have you and I changed the signaling process between estrogen,  leptin, and other messengers, thus calling  for increased cortisol? Apparently, the answer is: the number of times we  have dieted.  What happens after years and years of destroying communication between estrogen and leptin? We know only one thing for sure.  We have increased cortisol in our body perfect. It is now on chronic  high alert. It is starving to death, or so it believes. And it lives in a world of want and despair.

Next:

Part 4 of Cortisol and Estrogen: All about Cortisol, How it Leads to Obesity, and What You Can Do About It.

Relationship between cortisol and estrogen, part I
Relationship between cortisol and estrogen, part II

Irene’s naked truth about lipedema

November 9, 2015, 1:27 am

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By Tatjana van der Krabben

Recently Irene Captijn started a website to raise awareness for lipedema. I’ve known Irene for some time and have worked with her on another lipedema awareness project: the Dutch lipedema film We want to keep moving. Like she had her heart set on making that film, she was passionate about this website. She had my attention in no time with a beautiful picture of her in UV body paint, a creation by Liliana Hopman, with the slogan: Are you brave enough to see my naked truth?

Time to have a chat with this amazing lady about her new project!

How did you discover you have lipedema?
Unfortunately it took a long time before I found out. I was always a little heavy. All my life I’ve been dealing with my weight and my being overweight. I saw one dietitian after another, but they always told me the same: “I don’t know what it is; your diet looks fine.” And so on. I had an obvious pear shape; the excess fat was all on the legs and hips. After my two pregnancies I couldn’t fit into regular pants anymore, not even plus size pants. I stuffed my legs into self-made, wide-leg pants and I can’t even sew!

One day, in the school’s playground, a mother approached me and gently brought up that her mother-in-law had legs just like mine and that she had lipedema. After I returned home I immediately googled that word and found Tilly Smidt’s website. My legs were exactly like the legs in the pictures I found on that website. My family doctor was not convinced and assumed it simply was a name someone had come up with for fat distribution that described a pear-shape as opposed to an apple-shape, nothing more. Luckily, my doctor was willing to refer me to a dermatologist who gave me a diagnosis on the spot. I was actually happy about the diagnosis. There was a reason for my shape. It wasn’t lack of effort or discipline that caused me to be overweight. Unfortunately that happy feeling didn’t last…

Where did you get the idea to be a body paint model?

I do notice my health is taking a turn for the worse, despite everything I do to manage my lipedema. But the most important reasons for my activism are my daughters and the fact that they, too, have lipedema and already in an advanced stage. My brain is on fire for the cause because I feel someone needs to shout out for attention. It’s not really in my nature to be the center point of attention, but when it comes to lipedema I’m very passionate. 

I’m sick and tired of being labeled fat and lazy by the doctors I encounter and that they refuse to treat me ‘until I start making the effort and lose weight’. To a degree I get it; I work in healthcare myself and I, too, was raised with the notion that being fat is all your own fault… Society sees me as a fat woman who really let herself go, but the feeling of injustice in this matter sticks and stings, unfortunately. I’m so ready to be finally met with a some understanding and insight. If raising awareness could be done at a larger scale, somewhere a group of doctors could get their wake up call from it and start focusing more on the causes of lipedema. At this point we don’t even know what the cause is! Research is incredibly important and unfortunately research is currently being conducted at such a small scale. There are so many women who need help NOW.

I always said I would even go naked if that’s what it takes to get attention for this miserable condition. And that opportunity is exactly what crossed my path: at work I met a young lady who spontaneously started to talk about her mother, Liliana Hopman, who placed third in the 2015 global bodypainting competition with UV body paint. She showed me pictures and BAM…the idea was born.

You created a website about lipedema. What kind of information can people find there?

I’ve worked as a doctor’s assistant for years. I’m well aware of the perception of most doctors: 10 calories in and 50 calories out is the road to weight-loss. Period. There is no other way. When too heavy you overeat and exercise too little. There are no other options in their mindset; it’s what they were taught. Through my website I want to offer different information. It’s basic and limited to a description of lipedema, where to get diagnosed and information on self-management. I limited myself to bit-sized information on purpose: doctors are not interested in reading lengthy texts to start out with. Especially not about women dealing with excess fat. After all, they assume to already know the answer to that problem. By keeping it short, odds are more in your favor they’ll actually read the information.

The site links to the more elaborate websites that are already around. That way you can get to more detailed information if you like. The website is also for women who believe they may have lipedema. I’m aiming for a short, accessible website, keeping all the information in one place and the opportunity to go more in-depth by clicking the links to other websites.

 What do you hope to accomplish through your new website?
Awareness! At some point the earth was believed to be flat, right? Perception can change and knowledge can expand! Well, big legs (and arms) are not always the result of overeating and laziness. This notion needs to sink in. We need our own Pythagoras among doctors to prove this, who could help open the eyes of other doctors to another reality.

If the website would inspire 1 family doctor to refrain from labeling his or her patient as obese, but keep an open mind and refer that patient to a specialist, I would consider my 'nude mission' to be a success. I also hope that women who do not know yet what is wrong with their legs, or women who do know, but want to inform others, will use the information on the website.

Most attempts to raise awareness in reality evolve around informing friends and relatives of patients. You would rather target doctors. Can you tell us more about that?

Informing your own circle of friends and family is incredibly important. But like with our Dutch film, if you’re not careful, you keep targeting the same circle of people. Who takes time to look at that film? Those most likely to are the patient, their relatives, a neighbor, a friend, possibly a few therapists. But how do you go from there? If you take that route and target your own circle of friends and family via social media, specialists won’t see it, family doctors won’t and so forth. What I’m actually hoping for is that the bodypaint will provide a different angle and attract a new audience and seduce them into checking out the website. I feel it’s art. Let me rephrase that: it is art! I’ve started out promoting the website via Facebook. I do also intend to promote the site through different channels in the future; I’ll get to that later.

Should people be interested in collaborating with you or offering their help in some way, can they contact you?

But of course they can and yes, please! I can’t do this alone. I’m open to ideas and collaboration and possibly to a sequel to this bodypainting project. Sharing the website also helps a lot, of course. The site is available in both Dutch and English. This is the link to my contact details.

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Sneaking a poorly known medical condition into fiction

November 23, 2015, 6:21 am

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By Tatjana van der Krabben

Lipedema: a poorly understood yet common condition that causes the legs, hips, buttocks, and sometimes arms as well to swell with fat and fluid. Diet and exercise help manage the condition, but won’t make it go away. The swelling changes your appearance, is painful, and hinders mobility.

I devote a lot of time to raising awareness for lipedema, a condition I have myself. Some days, with social media already flooded with requests to share messages etc., you just can’t help but wonder: what else is there? On a sunbed on a gorgeous beach in the Caribbean, that question collided with another one: could I write fiction? I love writing different formats and fiction was still on my writer’s bucket list.

The clash of both questions was a happy one. Ideas started to come to me and evolved around a main character who conveniently has lipedema. Like many aspiring authors I was initially more like a perspiring author. It can feel silly to say out loud that you want to write a book, even after having published non-fiction already. Any book lover can tell you that a book is A Big Deal and writing one equally so.

In April/May 2013 I planned to go to New York and that location was firmly planted in my brain. The main character chose to stay there, so to speak. In May 2013 I was in Schenectady, New York and told Maggie McCarey, a friend, co-blogger with Lipese, and author, about my plan to write a book about a character with lipedema and asked her to be my editor*. From that moment on I truly felt like an aspiring author. I frantically took notes and pictures of locations I wanted to use. In June 2013 I started writing and in August I threw out what I had written so far. Idea vs. reality: a not so lucky clash.

I picked up the pieces and started over, writing nights. The setting was still New York City, but the lipedema became less prominent. First and foremost I wanted it to be a good book, not something that hadto evolve around lipedema. After all, that’s not how we lead our lives. This condition gradually infringes upon our lives, but it doesn’t define you. Lipedema is something intangible until you – finally – figure out what it is. You may even take the symptoms for granted until someone points out this isn’t ‘normal’, which happened to me. It’s also how I worked it into the book.

Lipedema is not the plot, nor a key factor. Then why bother bringing it up in the book? I just hope this book will reach people who simply take an interest in the book itself and then casually learn a little bit about lipedema. In the end it will also make the main character, Anne, a little easier to understand; she’s not lazy or passive, but in fact she’s slowed down by pain and fatigue a lot of the time, which she, like so many of us until finally diagnosed, takes for granted for lack of answers.

WELCOME… will be self-published as an ebook. I haven’t even attempted to interest an agent or publisher. This is a story I want told as it is, including and specifically with the references to lipedema symptoms like subliminal messages. That’s the lipedema advocate in me. Also, for each book sold, $0.50 (of $3.99 sales price) will go toward lipedema research. I wanted to be free to make these decisions.

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WELCOME… - Anne, a 22-year-old dreamer, gets invited to stay in an upscale Manhattan apartment by her aunt, a wealthy widow with a zest for life. All Anne needs to do in exchange for a rent-free stay in New York, is to watch her aunt’s cat for six months while she enjoys an extended vacation in the Caribbean.

It looks like a sweet deal, and a great opportunity to escape failing friendships and an overbearing mother. Anne eagerly commits to the cushy job, but soon learns the arrangement is too good to be true…

Stay tuned for release info via Facebook: https://www.facebook.com/TatjanaWrites/

* Although the book was written with the help and support of Maggie McCarey, it is not a project by Lipese. Since this project does aim to raise awareness and research funds for lipedema, it has been granted a blog entry on this platform.

The relationship between cortisol and estrogen - Part 4

November 30, 2015, 2:15 am

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Corticotropin-releasing hormone (CRH), the “master stress hormone” and the Greek Chorus

By Maggie McCarey

THE GREEK CHORUS: Each of us has a Greek chorus inside our heads, every waking and sleeping moment of the day.  Unbeknownst to us, they call upon our  hypothalamus to coordinate their reaction to everything we do.  Most often they are messengers of doom.

 

THE HYPOTHALAMUS: Vanessa Bennington describes the hypothalamus in What You Don’t Know About CRH Can Kill You. She says: Our hypothalamus is the control center. It receives messages from within the body that tell it if we are indeed in stress, and then the hypothalamus coordinates the actions needed for the body to react. Our emotions, skin temperature, pain level, and electrolyte balance are all things that the hypothalamus compares to our baseline. Basically, the hypothalamus functions as the epicenter for the mind-body connection.  http://breakingmuscle.com/health-medicine/what-you-dont-know-about-crh-can-kill-you

 

Now, while we think of stress as negative, it is also positive: emotions and memories evoked at a wedding, for example, the thrill of a winning lottery ticket or receiving an unexpected compliment, a cool drink on a hot day. And, a stressful event can be contradictory like watching the Olympics, and feeling both joy and sympathy, when another country  falls behind your country’s team. Butterfly surges in the tummy are perfect happy examples of the hypothalamus at work, too.

TRANSLATED: you are what you fear; what you hate; what you sing; you are what you love; what you need; what you pray ….YOU ARE WHAT YOU BELIEVE because your emotions trigger your hypothalamus to receive all external stimuli, without judgement,  and then to send it on to the appropriate department, like your tear ducts to make water, the vocal chords to sing or scream, the hands to clinch, or the feet to run.

HOW THE GREEK CHORUS CAME TO BE:  They are the sum total of our reactions to everything we have ever encountered outside our bodies perfect, as well as our genetics. If  what you felt at any given moment, was only one or even a dozen emotions, life would be grand, but that is not how we live, particularly in this age with the world, good and evil, at our finger tips. We have layers of complexity coming at us all of the time: commutes in insane traffic, our workload, a multitude of relationships to maintain, technology to learn, 15 hour a day schedules multiplied by the number of family members we have, financial burdens, climate change, sickness, childhood trauma, fear of flying, dating, divorce, boredom, rain, drought, no food in the fridge, tires to buy, fear of death, and desire for salvation, all heading to the hypothalamus (clearing house) at the same time.  As a result of selectivity, some members of the chorus dominate; others are silent. There’s just not enough time in a day to cope with all of it.

 

CHRONIC STRESS and CORTICOTROPIN-RELEASING HORMONE (CRH):  Corticotropin-releasing hormone is also called the “master stress” hormone.  It is released by the hypothalamus in response to stressful stimulation. Do you see where this goes?  Again quoting Bennington: CRH functions as both a hormone and a neurotransmitter. CRH’s role as a hormone is to stimulate the anterior pituitary glad to release adrenocorticotropin hormone (ACTH). ACTH then reaches the adrenal cortex in the adrenal gland, which causes the synthesis of cortisol as well as several other hormones. So, when a stressful situation occurs, CRH goes up and eventually stimulates more cortisol production.” http://breakingmuscle.com/health-medicine/what-you-dont-know-about-crh-can-kill-you 

 

If you are chronically stressed you will also be chronically over-stimulated and you will make high levels of cortisol  so that daily living will trigger and affect your body perfect like a wrecking ball coming at you.  Bennington says:  “Chronically increased cortisol levels …can lead to all sorts of issues like the redistribution of fat from the thighs and buttocks to the abdomen and upper back, insulin resistance, fluid retention, high blood pressure, decreased immune function, muscle and connective tissue wasting (joint pain, anyone?), and inhibited peptide and hormone production. Absolutely 0% of that is good for health or fitness.”

Chronic Stress?  That’s the full Greek Chorus singing Mozart’s Requiem on a loop day after day.

If you read the first three blogs on cortisol and estrogen, you may have just raised your cortisol a little….but there is more.

UNTIL WE BECOME AWAKE ENOUGH TO TRUST OUR HIGHER SELVES AND THEIR INNATE ABILITY TO COMMUNICATE WITH OUR BODIES PERFECT, WE WILL NOT ACHIEVE PEACE WITHIN. NEITHER WILL WE ACHIEVE DETENTE  WITH OUR FAT AND SELF-LOATHING ILLUSIONS.  CHRONIC STRESS WILL CONTROL OUR LIVES UNTIL WE CAN HEAR  THE GREEK CHORUS’ KEENING FOR ITS LOST MOTHER AND RETURN TO SELF AS ONE WHO IS STRONG AND WISE.

We have to become good parents to our bodies, break through their pain in order to parley with lipedema. Our bodies do talk to us and they will cooperate with us when we are calm. They only want to be loved as they are.

Losing circumference and weight with lipedema legs

December 17, 2015, 9:27 am

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By Tatjana van der Krabben

Losing weight from your legs and losing circumference on your legs. Despite having lipedema. Can it be done? Many say no. Some say yes. Now, what is it? It’s individual, that’s what it is. It’s always individual cases of people saying they managed to lose weight and they do it with very personal, customized regimes.

But what makes weight-loss in lipedema legs possible for some?

There are 3 factors that we know of. If you’re lucky one or more of these factors could help you reduce mass on your legs (and lipedema arms).

Inflammation

Although still not broadly supported, and certainly not in literature, it is believed that lipedema flares up with inflammation. With inflammation not only comes pain and fatigue, but also swelling. If you manage to reduce inflammation, you may be able to reduce the swelling. You’ll mostly shift water weight and toxins, but as a big added bonus you’ll feel better for it, too.

We don’t respond all alike to inflammatory factors. Some of us have cut out so many foods, additives and allergens they are clueless what else could possibly be causing the remaining inflammation. Others drop bread and sugar to a degree and shed pounds instantly. No, fairness is not on the table in the lipedema world.

An untreated serious edema component

If you have lipo-lymphedema or a strong edema component with your lipedema for another reason and you haven’t started treatment for that, there’s a lot to gain. Or to lose, actually. The more edema you have, the more water weight could be shifted.

Could, because the edema component is there for a reason. If you’re prone to swelling, it won’t magically disappear with (self) management. Or perhaps you can’t afford treatment or don’t have access to proper treatment. It takes hard work and more so dedication, but with untreated edema there’s usually margin for improvement there.

Amount of lipedema tissue in your legs

The top two factors I was aware of. But this one was an eye opener:

We don’t all have the same amount of lipedema tissue in our limbs.

As explained to me in a presentation by a therapist specialized in lipedema: some of us are lucky and still have a good amount of normal fat cells in their legs. That would be good news since normal fat cells do what the fat police wants: they do respond to diet and exercise. And there’s your personal margin for improvement. Assuming your thyroid is on top of his game and you’re physically able to exercise and, and…

Unfortunately all these factors are highly individual. This makes good results with diet, exercise, supplements and what not also highly individual. “Because I did it” is not proof you can lose lipedema weight. Most likely, if you have lost weight, you lost water weight and/or normal, unaffected fat, which is great, of course. Even if you don’t care too much about your size, dragging less weight around with you is always easier. It also may very well be a sign you are not only managing your weight, but also your lipedema in a way you experience less symptoms.

I would say (self) management of lipedema matters always. Whether you manage to drop weight or not. There are other things to gain from lipedema management: less discomfort, less pain, less fatigue and improved mobility. As I get older I must say I value these factors more than that number on my scales.

Celebrating 100,000 blog views

December 27, 2015, 8:52 am

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By Maggie McCarey, Stefanie Gwinn-Vega, Christina Williams Routon & Tatjana van der Krabben

We’ve been posting on social media about a surprise, and to us it truly is. We certainly have been looking forward to this moment, guessing what day it would happen. And here it is!

In November 2012 we started the LIPESE blog with this blog post:
My Experience - MLD (Manual Lymph Drainage) and Compression Therapy

 

3 years and almost 100 blog posts later we have hit 100,000 blog views! Early Christmas morning, no less.

Thank you for reading the LIPESE lipedema blog

Not even in our wildest dreams did we anticipate our blog to be this well-read, or that we would write this many blog posts. It has proven to be a valuable platform to spread realistic information about lipedema and lipedema treatment. It has proven its worth particularly for those living in corners of the world where there is no expert help present, or for those unable to travel to the conferences to hear about the latest research, or those who can’t afford to see an informed specialist. We sincerely hope it will continue to be that little light out there.

Giveaway to celebrate 100,000 blog views

To celebrate this milestone of 100,000 blog views we are giving away 10 copies of Tatjana’s ebook Welcome…which will appear January 4, 2016. Part of the proceeds of this book will go towards lipedema research. For Lipese it will hopefully mark the start of supporting significant lipedema research financially.

If you would like to win a copy of Welcome…, you can enter by leaving your name in comments. On January 12, 2016 we’ll draw the winners!

The Theory of Opposing Processes in Illness and Healing

January 23, 2016, 6:16 am

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Maggie and Joe McCarey-Korkin

The Underlying Mechanism of Alternative Healing

Non-traditional healing methodologies, referred to as alternative healing, are now grudgingly acknowledged as providing varying degrees of benefit for a broad spectrum of physical illness. However, the non-invasive and nonvisual nature of these healing techniques gives scoffers the means to debunk their powerful underlying healing mechanisms and modes of therapeutic action.

These challenges are fueled both by religious and medical pedagogies based in tradition and domination rather than in testable explanations and predictions about the universe, or as it is known, science. To begin with, the medieval church gained control of medicine by hanging or burning anyone who practiced medicine outside its control. Using the populace’s archetypal fear of witches and medicine men, the church convinced people that such healing came from the devil, especially if the patient survived. Archetypes never die. To this day, alternative healing has been dismissed, at worst as witchcraft, and at best, as “alternative.”

Consequently, alternative healing modalities are still thought to be ignorant, dangerous, and parochial: hocus locus, based in pagan spirituality, rather than in science. This view is still believed and promoted by the medical community, including insurance companies, and law makers who disallow the efficacy of any healing method outside its control. And for good reason. There is no profit in alternative healing. which is found in the hands of all who accept that human beings are born with an ability to give and receive healing energy from each other. To challenge this innate power is to challenge the texts from which you derive your understanding of God’s nature, but the tightly managed fear of others, keeps the world afraid of gospel medicine.

We hope with this research to refute and debunk the AMA’s tight control over our bodies by providing a general theoretical framework and scientific application to the underlying mechanism of alternative healing.

A List of Alternative Healing Modalities

Yoga* Prayer* reiki* cranial sacral therapy* Singing* Laugh Therapy* meditative music* Deep Breathing* therapeutic touch* positive thinking* laying on of hands* acupuncture* bio-sonic repatterining* crystal healing, chakra* healing* tuning forks* humming bowls* chanting* quantum healing* AMMA therapy* aromatherapy* breema bodywork* dance therapy* Feldenkrais method* Jin Shin Jyutsu* hot rocks therapy* massage* myofascial release* Qi Cong* shiatsui* art therapy* color therapy* eye movement desensitization and reprocessing (EMDR)* guided imagery* music therapy* neuro-linguistic programing (NLP)* stress management* T’ai Chi* herbal therapy, hydrotherapy* magnetic therapy* acupuncture, and more.

OUR HYPOTHESIS

SCIENCE:
All matter is composed of molecules which, in turn, are composed of atoms. Going further still, one finds that these atoms are composed of members of an ever-growing list of elemental particles. Atoms attain their unique character by virtue of the structural arrangement of their constituent elemental particles. This structural relationship is determined by the energetic interaction between those elemental particles. Similarly, the structure of molecules and their energetic interactions with atoms ensure an ongoing
dynamic present in the body. Let's explore how this concept can scale macroscopically within a biological context and understand why it may be significant.

The human body is composed of many mechanically and electrically inter-connected structures comprised of different types of cells. In this view, biological activity is analogous to our gross description of raw matter above. We know that if large enough quantities of those cellular components are altered from their normal composition the associated structure malfunctions. Profound consequences can result due to the inter-connected nature of those structures resulting in a domino effect of failure or disease.

MEDICAL SCIENCE:
As an example to introduce one of the central underpinnings of our theory, consider one aspect of the human heart: heart rate. The rate at which the heart beats is determined by

the signals it receives from the sympathetic and parasympathetic systems. One system instructs the heart to beat faster in one system while the other system receives a slower instruction. The result is a constantly changing activation signal. Researchers disagree whether those activation signals can be strictly classified as chaotic or simply complex as viewed through the analytical lens of nonlinear dynamical systems theory. What is most interesting for our purpose is that if the complexity of the heart activation signal is lost or absent, so that the signal is uniform and periodic, then heart malfunction is imminent[1].

Here we observe two opposing processes such that if one were operating in isolation the destruction of the heart muscle would be rapid and certain. Yet it is the counter balancing effect of one process juxtaposed against the other that sustains the heart. Moreover the normal healthy functioning is one of controlled imbalance; the result is non-uniform. This elaborate dynamic has been identified in many areas of nature, physics and physiology.

ENERGY PHYSICS:

The two important features common to all normal functioning is the presence of simultaneous opposing processes and the resulting chaotic or non-uniform dynamic in which those processes engage each other.

How are these observations critical to healing in the context of the human body? The answer may be found within another area of research: energy physics. The property of sonoluminescence is the occurrence of a brief flash of light that is emitted from a collapsing gas bubble embedded in a viscous liquid that has been subjected to continuous sound waves. After the bubble reaches maximum compression and the flash of light is emitted from the core which is now in an extremely high energy state, it begins expanding rapidly. One would expect the bubble to simply expand and disintegrate but instead the resulting vacuum that is creating within the bubble prevents this by creating an internal counterforce to the rapidly accelerating bubble membrane. The bubble reaches a maximum expansion state until the arrival of a next sound wave which restarts the compression phase. Theories place the temperature of the compressed plasma within the bubble at around four times the temperature of our sun[3]. This phenomenon is neither revolutionary nor unique in our universe. “One of the key unsolved problems of physics relates to the motion continuous media and can be formulated as follows: Why is there a general tendency of the off-equilibrium motion of continuous media to be characterized by the formation of structures and the focusing of energy?” [4]

SCIENCE
A large percentage of the human body is continuous media whose off-equilibrium motion either on a macro or micro scale is critical to healthy functioning as we have illustrated with our earlier discussion of heart rate activation signals. If uniformity is imposed on those processes, passed from a healthy system to the sick system, normal function of the second system may be restored by retraining those processes such that its dynamic is once again non periodic or chaotic.

Before the world was round, it was flat. Before the body was understood, it was a stick figure, which after time, was known to have removable and non-removable parts.
A this stage in history, the human race is trying to understand that the body is more than a stick figure with removable and non-removable parts. It is trying to understand that, like planets and solar systems, it is both a macrocosm and microcosm of life. We are beginning to grasp the scientifically based notion that the body perfect synchronizes energetically and vibrationally to the All of Life—plants, trees, waves, sound, light vibration, and other living beings. We are slowly comprehending that the body perfect performs continuous media that looks like the above dominoes illustration in constant motion and in simultaneous overlaying configurations rather than the hours, days, and years we assign to explain existence: nonorganic words like life, death, eternity. The theologian Paul wrote a perfect description of learning to see life in the midst of life. “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (Second Corinthians 4: 17-18. ) It is this principle of the unseen and our dedication “to see beyond the “accepted and approved” world” that holds the key to health in the future.

In the time you have read this paper your body has, ever so quietly, and ever so swiftly, used its intelligence to perform billions of little expansions and contractions. Unfortunately, when this silent process repeatedly misses a signal, it impedes the actions of the original blue print. No problem. Knowledge of missed signals is part of the body’s self-healing protocol. It simply finds a new route in order to sustain life. To the untrained eye, this valiant and creative effort to survive is called disease rather than correction. In truth, it is creative, not failed, and for us who have lipedema and/or lymphedema, the body correcting itself looks like this:

The unseen triumph of the lipese body is that it is determined to keep its malaise from the internal organs needed to sustain life. This view of the body is compatible with a cosmological notion that God knows even when a sparrow falls from the sky. Ever vigilant, concerned with survival, caring and nurturing the whole, it constantly adapts to heal itself.

THE SCIENCE OF ENTRAINMENT:
Some mechanism must first exist, either artificially or in nature, if retraining of a process or energy pattern to another pattern is to occur. Again we can benefit from a historically early exercise in basic scientific observation and method. The phenomenon of entrainment was discovered in 1660 by Christiaan Huygens when he observed that if two separate pendulum clocks are mounted to a board their pendulum swings will become synchronized [5]. This happens because each clock imparts a very small amount of energy to the other clock and a type of feedback loop is created the forces the clocks to synchronize. Entrainment of mutually coupled systems has been observed and studied in biological, physical, electrical, social and financial systems.

The synchronization of two separate pendulum clocks lead us to the “HOW” alternative healing works. Our research argues that this entrainment event is the core mechanism to the success of alternative healing.

We have shown results from energy physics that off-equilibrium motion within a continuous media results in the formation of structures and that the focusing of energy is ubiquitous in nature. We believe that an individual with a consciously maintained healthy energy structures resulting from off-equilibrium motion within there cellular media should be to focus the resulting energy field onto the energy field of a less healthy individual. Entrainment would then cause the less healthy field to lock to the healthy one.

THE SCIENCE BEHIND HOW WE HEAL EACH OTHER:

Over time the associated underlying structures of the less healthy individual would also improve. It is critical to note that it is unlikely the healthy energy pattern would lock or entrain to the unhealthy one. The reason is that the unhealthy energy pattern is the result of passive entrainment to uniformity through the mechanisms of culture, diet and substances, whereas the healthy energy pattern is consciously cultivated and maintained and therefore more resilient.

Alternative healing then is analogous to a healthy person rewriting and rebooting the cellular memory of a person who is ill as defined in the phenomena of entrainment. His or her health state restores the unhealthy state back to healthy.
 

1. Wu GQ, Arzeno NM, Shen LL, Tang DK, Zheng DA, et al. (2009) Chaotic signatures of heart rate variability and its power spectrum in health, aging and heart failure. PLoS One

2. Vinita Rangroo Thrane, Alexander S. Thrane, Benjamin A. Plog, Meenakshisundaram Thiyagarajan, Jeffrey J. Iliff, Rashid Deane, Erlend A. Nagelhus, Maiken Nedergaard (2013).

"Paravascular microcirculation facilitates rapid lipid transport and astrocyte signaling in the brain". Scientific Reports 3 (2582). doi:10.1038/srep02582. Retrieved 9 December 2013.3. Putterman, Seth (1995). “Sonoluminescence: Sound into Light”. Scientific American(32), February 1995.

4. Seth Putterman, Professor UCLA. Sonoluminescence research website at ucla.edu

5. Birch, Thomas, "The History of the Royal Society of London, for Improving of Natural Knowledge, in which the most considerable of those papers...as a supplement to the Philosophical Transactions," vol 2, (1756) p 19.

Unsollicited lifestyle advice is harmful

February 16, 2016, 4:08 am

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By Tatjana van der Krabben

Unsollicited lifestyle advice – When you completely miss the fact that we were not sitting here idle, waiting for you to step forward with your insights.

Many not only miss this point, they hop straight to the guilt trip. We are supposed to feel bad, dislike ourselves and be more than ready to try the latest fad in diet or exercise. We are expected to jump to the opportunity no matter what the suggestion. As if it were a golden ticket to Willy Wonka’s Chocolate Factory presented by Mr. Wonka himself.

Chocolate… Where was I again?

Exactly. This is what too many people actually think. That I have (junk)food on my mind 24/7. That I haven’t seen the inside of a gym since the previous century. Neither is true. It’s unpleasant, to say the least, to watch a conversation skid and to find myself defending lifestyle choices and explaining again and again why I look the way I do. I shouldn’t have to. Not only that, it’s as pointless as explaining why my eyes are green and my feet are small. I simply have lipedema. It’s part of me – like it or not.

The truth is that we are the new smokers. Society thinks it’s okay to lecture us out of the blue. We not only deal with lipedema, but also with the ruling false assumption that body weight is all about calories in and calories out. It makes us automatically to blame for excess body fat, hence the mandatory guilt trip. It’s an unfair assessment which is unhelpful at best for those who are struggling to accept the way they look. By projecting their own (temporary?) excitement over a particular work out regime or diet they are much like a bull in a china shop, doing more damage than good. Maybe they mean well, but I will never be the one to drop 2-3 pounds a weeks, let alone several weeks in a row. Insisting they know a way around that is insulting. It implies I haven’t tried hard enough. And the saddest part? In their efforts to impose certain lifestyle choices I mostly recognize their own obsessions and frustrations regarding their body image being projected on me. Or a chance to shine with assumed moral superiority, which frankly is despicable.

It’s not only annoying. Much of the advice I get is plain wrong for me and anything but medically sound. It’s unbelievable that people are able to think they’re qualified to give lifestyle advice to a chronic patient, regardless the condition, based on something they read in a glossy magazine or seen on a sponsored TV show. If our doctors did that, there would be consequences for sure!

The insensitivity when it comes to the fat is mind blowing. So many people with lipedema (or obesity) suffer from depression, low self-esteem, a negative self-image and/or eating disorders. Yet, we are confirmed in our feelings: they’re labelled ‘appropriate’ for our current state and are meant to encourage us into a healthier lifestyle. By sending the message the plus-sized are not worthy is plain cruel. Change is not always on the table. Sometimes because of an underlying medical condition, sometimes because someone simply isn’t ready to take on the challenge and sometimes – tada – because they’re happy just the way they are.

Size is such a limited perspective. It doesn’t even define healthy living. Just look at Witney Way Thore from My Big Fat Fabulous Life: definitely plus-sized due to chronic illness, but also super fit and living a healthy lifestyle. I know some of us desperately try to prove we didn’t bring lipedema onto ourselves and claim we only eat very little, if not starve ourselves. I feel we shouldn’t have to defend ourselves. The fact that some of us are essentially starving themselves is horrible! Is that what it takes to ‘prove’ we give it our all?! That’s crazy! We should drop the apologetic attitude. We don’t need to accommodate their ignorance and justify fact. I’m done with that. This is how I feel these days:

Unless you’re a doctor with knowledge of lipedema, walk a mile in my shoes first, or zip it.

I have a beach body, just like everybody else

March 28, 2016, 5:34 am

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By Tatjana van der Krabben

In about a month me and my bits and bumps are hitting the beach again. In a tankini, without additional cover ups. That is neither good nor bad. Neither brave nor a display of lack of style. It just is the way I prefer to be on the beach. A minimum of wet fabric sticking to me. Feeling the breeze on my skin.  

I’ve done the pareos and the tunics in the past. It started that first vacation after discovering I had lipedema and still had to come to terms with the fact that, in my case, it was no such thing as ‘baby weight’ which could still be melted off somehow. Also, someone was kind enough to whisper into my ear that I should really look into cover up options (not my spouse!). It landed on fertile soil, being terribly insecure and frustrated because of my altered mirror image.

That trip I brought two tunics and two pareos. In the end I wore them only a few times. Towards the end of the trip I would only slip something on when someone wanted to take my picture. Otherwise I found the cover up strategy a waste of time and energy. It was hot. It didn’t fix that awkward moment when you need to take it off to swim and walk to the water in nothing but a bathing costume. You could decide to keep all sorts of clothing items on in the water, but I found it uncomfortable. Especially when exiting the water and having all that heavy, wet fabric sticking to me. The moment I realized I was crossing the beach several times a day with exposed legs, just to get in and out of the water, I really couldn’t be bothered anymore.

That was me being practical. I was still fussing and constantly checking what angle I displayed the least cellulite. Along came this fab local lady, at least 4 sizes bigger than me, rocking a pair of hot pants on the beach. She was having fun. She was not only confident, she was in her element. That was the last drop. To me, she was doing something right and I was definitely doing something wrong. I let go of most of the stress and self-consciousness right then and there.

I can really enjoy the moment now, even in a bathing suit, completely forgetting what I look like. In my mind I’m thinner anyway. That bubble bursts quite violently when I see myself back in pictures, of course. That’s still an issue. I still haven’t found a way around that, or rather how to push through that, even though a decade has passed since my diagnosis.

There’s also always that awkward first vacation day. That’s when I’m really self-conscious. Every single time I need to take the hurdle big time on the first day. The second day is better and by the third day I’m good. It’s my vacation, too. I’m entitled to enjoy myself just as much as the next person.

I love the ocean. I walk around the beach with the lines of my snorkeling mask pressed into my face and a dumb grin. Or I sift through the sand looking for shells or fossils. Let’s not forget swimming. It’s the one place where moving doesn’t hurt, my weight doesn’t hinder me and where I can move freely. If I swim al lot, I can get away with not wearing compression during the day, even when it’s hot.

The ocean makes me feel free. To the point I actually feel comfortable to engage in small talk with complete strangers. There’s no judgement. The snorkeling gear is leading, tall tales you can tell about what you saw in the water, there or elsewhere, and the fun and excitement that comes with that. Or comparing finds on a fossil-ridden beach. Just as long as I’m experiencing that beach-vibe, everything is easier, even though my legs and arms are on display. Not to mention that I tan in three different shades: not (legs, upper arms), slightly (face and lower arms) and a lot (neck and back).

A lot of it is attitude, positive energy and making up your own style rules. Unfortunately, so far my portable comfort zone only deploys on vacation. It would be nice to find a way to take that vacation vibe and mental freedom home with me, to enjoy it 365 days a year. I’ve still not found an answer to that, but I stand by it: I have a beach body, just like everybody else. All it takes it taking your body to the beach, and voilà.

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Starving yourself is not the answer

May 14, 2016, 11:28 am

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By Tatjana van der Krabben

Starving yourself, starvation, fasting: these words seem to pop up everywhere these days in relation to lipedema. And not just with respect to lipedema. There’s talk of ‘starving tumors’, resetting and/or cleansing your body by fasting, skipping meals like a caveman etc. The emphasis is shifting to what is not ingested, instead of what you should or could ingest. Before you know it the (presumed) science behind these tools is translated into numbers of calories and ways to cut calories, as we are all drilled with the low-calorie myth.

With doctors still (!) recommending gastric surgery for lipedema, the fad of the hCG diet which was paired with extremely low calorie food plans, the popularity of juice detox-fasting and the presumed beneficial effects of (intermitted) fasting, the extreme low calorie theories as somehow being beneficial for lipedema after all keep creeping into conversation. I don’t buy that. Plus, this line of reasoning is creeping me out. It creeps me out because it’s a slippery slope: if you don’t lose weight at, say, 1500 calories a day, they drop the recommendation to 1200, then 1000. Where does it end? With hCG they dropped to 600 calories. That’s incredibly low, to put it mildly. Just because we need to fit the calories in and calories out myth.

Weight-loss is not simply about calories in and calories out. Yes, a lot of doctors still say that, but that’s because they didn’t keep up with research on this topic since medical school. A frustrating example in my own household: my son has to eat like crazy just to maintain a healthy weight, my husband was the same and can still eat an insane amount of calories without showing it, but my daughter and I have to really watch what we eat. There is no general standard in metabolism which you can quantify with a number of calories per day, even though this is being done anyway. We simply are all different and don’t process food alike.

On top of that, lipedema is not caused by overeating. It can be aggravated by overeating, but that’s another story. As lipedema is not caused by overeating, it seems farfetched that eating (extremely) little could fix it. I know many of you are familiar with the images of women with anorexia, who still displayed clear signs of lipedema. Sadly, these women prove that point.

Starving yourself is not the answer. Food is not the enemy. Good food provides nutrients, the stuff that keeps you strong and healthy. You can’t build muscles on air. You can’t maintain strong bones and teeth, and have enough energy to face your day by limiting yourself to a few mouths-full of food day in day out. Food is sustenance.

Moreover, lipedema appears to coincide with deficiencies in essential vitamins and minerals. Vitamin B12 and D deficiency is notorious among lipedema patients, as low levels further undermine energy levels. Some say it’s because we already tend to eat too little as it is. Others speculate it’s something in our metabolism. I don’t know what it is, as lipedema metabolism has never been studied. I only know that if you’re already prone to deficiencies it’s not particularly helpful to deprive yourself of sufficient quantities of foods containing essential vitamins and minerals.

There’s no nice way to put it. Lipedema in itself already can already affect quality of life. Deficiencies only make you feel worse. It’s a sign your body doesn’t get enough of what it needs to keep the system running smoothly. It’s not just a matter of discomfort: deprivation leads to health problems and in the long run to permanent health damage.

I know many of us have to use supplements or get for instance B12 shots to compensate regardless, but access to supplements cannot justify deprivation. My two cents: even if modest (!) fasting or throwing in a liquids-only day is said to be beneficial, it should be nothing but a tool in the bigger picture, never a goal in itself.

Dear doctor, can I make a wish?

June 14, 2016, 10:17 am

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By Tatjana van der Krabben

It’s June. That means it’s Lipedema Awareness Month. For me that’s a time to see how far we’ve come and where we still need to get to. I’m greedy and needy, I know. I want research, the kind that helps us learn about what lipedema exactly is. I want more informed doctors, a better prognosis for patients, early detection all around, more effective treatment options and better access to treatments.
I know that takes time, so that would be mostly for the next generation, but I’ll take it. I want better coverage for treatments by health insurance companies, too. Because, frankly, this unproven thing is getting kinda old. And so is that assumption that it’s about cosmetic issues. We’re not that far back in the lipedema dark ages anymore. Seriously, read up, people. And while I’m at: treating us with lymphedema and obesity protocols should equally be abandoned as a thing of the lipedema dark ages. Come on, give me a little renaissance here, doc.

But for all of that to happen I would need to make another wish, dear doctor. I feel it’s essential. So may I squeeze in one more request? Say what? I’ll take that as a yes, if you don’t mind.

Lip means fat and edema means fluid. I know every condition needs to get a name and this is what we got. But that shouldn’t mean we can’t look beyond the semantics of this thing, right? Because despite the fact more symptoms have been brought forward and get a mention here and there in case-based literature, most attention still goes to either the fat or the edema we carry around. We even have doctors specializing in treating the one or the other, even though we deal with both symptoms at the same time. And some.

Lipedema has more symptoms that get frightfully little attention. I can’t give you a list, because there is no acknowledged comprehensive list. There is no consensus on which suggested symptoms exactly are part of lipedema and which are not. Isn’t that a little weird 70+ years after acknowledging the existence of lipedema? Come again? I’ll take that one as a yes, too.

We need this consensus. Badly. When only a handful of specialists are aware muscle weakness is a thing with lipedema and bother to look into reactivating the patient safely, most of us strike out. Leaving us either with taking this symptom for granted or forcing us to work on remobilization without professional care and input.
Our worn knees don’t get replaced or treated otherwise, ‘because we’re too young’ or ‘too fat’, completely ignoring the lipedema component in the process and the fact that they are condemning us to further loss of mobility with this verdict.
I’ve seen specialists argue low levels or malabsorption of certain vitamins and minerals is a typical lipedema-thing we should get checked out after diagnosis and other specialists calling it pretty much a myth and the occurrences of malabsorption among patients a coincidence.
I’ve heard specialists argue we should stay clear of birth control with hormones or hormone replacement therapy as it would aggravate lipedema, and others, when asked, saying that’s not proven nor did they ever notice anything like that in their patients.

These are only some of the dilemma’s and hurdles we face. We’re talking quality of life here. Some grip on our prognosis. A chance of a better prognosis, if we manage to get things right, best as possible. Do what is right for our lipedema and, yes please, do it with proper, covered medical help, instead of DIY’ing ourselves through this. That all starts with a better understanding of lipedema, and trust me, that goes a whole lot further than ‘fat’ and ‘fluid’. True: you can’t whip up valid and substantial research. I understand, but there IS data to give you a head start. How about that.

So can I ask you something, dear doctor? Just have a look at the results of the surveys that patient organizations have compiled and spread among their members. There’s a goldmine worth of information and leads there. Just waiting to be used, researched and, if applicable, acknowledged.

There have been surveys by Lipoedema UKand the LIPV (partly in Dutch), among other.

Come on, doctor, make my month.

When the mental struggle with lipedema fails…

June 23, 2016, 6:05 am

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By Tatjana van der Krabben

Yesterday the hairdresser came to my house. There was my mother and the kids, and we did our ‘Steel Magnolia’s’-thing in my kitchen. Over the years, like a broken record, I’ve been sharing about lipedema and our hairdresser is now well informed. So when she picks up news regarding, she shares. We really needed to brace ourselves for what she had to tell yesterday.

A 20 year old girl in her town committed suicide because she couldn’t cope with living with lipedema anymore.

I don’t know her, but that doesn’t matter. These things get under your skin instantly. It’s incredibly sad.   

Over the years I found it hard to write about the mental struggle with lipedema. In part because I’m a silver lining kind of gal, in part because the thought of a silver lining keeps me going like a hamster in a hamster wheel, and in part because a focus on the mental struggle tends to only feed bias. Bias that lipedema is largely about appearance and how we feel about that. That bothers me, even though that aspect is real and valid.

When Joanna Dudek (SWPS University of Social Sciences and Humanities, Warsaw, Poland) came forward with her research on the psychological aspects of living with lipedema, a lot of us sucked air in between our teeth. It’s not like it wasn’t valid what she had to say, or not sciencey enough, or whatever. It was the focus on mental health. Lipedema sucks. I think we can all agree to that, but many of us fear this type of research and reasoning pushes toward the already very popular angle of teaching us coping mechanisms and providing us with symptom relief strategies, instead of trying to come up with answers and treatment options for the underlying issue: the lipedema. But the news I got yesterday does put things into perspective again, and knocked me right off my soap box.

The pressure of being unable to sculpt your appearance according to what society perceives as ‘pretty’, ‘attractive’ and ‘healthy’, while being told again and again that you can and should work on your appearance, is immense. We get to be labeled lazy, overeating, ugly, fat, lying etc. We get labeled by medical professionals, friends, family and complete strangers. And then a sweet 20 year old girl, fresh out of school, just starting her own business, with her whole life ahead of her, cracks. The hard way. The irreversible way. I can only imagine how she must have suffered until she couldn’t take any more. This sucks.

10 things I Iearned since my lipedema diagnosis

August 3, 2016, 4:47 am

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By Tatjana van der Krabben

1.     Weight is not about calories in and calories out
This was a relief. Society may not get this, a lot of doctors may not get this yet, but I finally had it confirmed I wasn’t crazy or imagining things. Can you believe those yahoos actually had me consider the possibility that I was eating while sleep walking?!

2.     Calculating my BMI is a waste of time
BMI says exactly, well, nothing. It’s being discarded as a suitable tool for an ever longer list of exceptions, ranging from muscular people, to Asians, and from very short people to really tall people. They didn’t get the memo yet that it doesn’t apply to those with lipedema or lymphedema either. No doubt we would still miss more that shouldn’t be hassled with a 4^th grade math formula to define health. May I suggest we give up on using this for everyone else as well? It just isn’t serving the intended purpose.

3.     People call wearing compression ‘brave’
That would be because of their poor image, no doubt. Yes, most compression garments are ugly and a pure anti-fashion statement, but not necessarily. Eventually you get really clever with your choice of clothing and some compression wear actually looks nice. The rest is attitude. A lot of people, if not most, don’t notice the bit of compression sticking out from under my calve-length dresses. I seriously hated starting with compression, but I must say, when you benefit from them, that really changes your perspective.
When measured they commonly get you started with something hideous. Do ask what else they can offer.

4.     I do not like plus-size stores

        Eventually I needed to shop at plus-size stores for the better part, but they mostly offer clothes for apple-shaped ladies, not so much the pear-shaped ones. They also offer a lot of things that are less than flattering, or designs without lining or made with thin fabric that accentuate everything you don’t want highlighted. Despite these rather obvious misses, most plus-size fashion is way more costly than clothes in the smaller sizes. I hate to say it, but I’m not impressed with most plus-size collections.
It’s a sore point. I really miss being able to dress the way I used to, and the amount of time and effort I need to put into finding something I like is not helping! On a positive note: the staff in plus-size stores is usually super nice and helpful.

5.     The words ‘chronic illness’ are a conversation stopper
Don’t say I told you this, but if you ever need to get out of a boring conversation…

6.     ‘Managing your lipedema’ is mainly effort with an unpredictable outcome
Lipedema messes with you. What is part of your lipedema and what isn’t, what is a realistic prognosis, how much result can be expected? We just don’t know. Different people respond differently to the various types of recommended therapy. And for those of you who secretly - or not so secretly - think that those who say something doesn’t work for them don’t try hard enough, I have a little example that has nothing to do with following regimes, but everything with the involuntary response of our bodies to the lipedema.

Estrogen is believed to be a factor in lipedema symptoms. Take pregnancies. Some gain and swell, until they look like the Michelin man. Others remain stable, and others even lose weight: 10, 20, 30 or even 60 pounds. They just do. Therapy is the same. Some drop weight with a new approach, others remain stable and there’s also a group who will feel like crap and/or gain on your ‘successful regime’.

Based on today’s knowledge I would have to say that lipedema is unpredictable. Maybe we’re currently labelling 3 different things as ‘lipedema’ or will eventually identify subtypes. The whole medical perspective is still so wide open, that could easily happen. For now all I can say is that there’s no one regime that does the trick for all.

7.     Liposuction is not taking the easy route
It’s surgery. Surgery is never easy. Recovery isn’t exactly effortless or pain-free. It doesn’t cure lipedema either, which means your days of putting in effort to manage the lipedema are not behind you. So, no, it’s not the easy route. It can be a faster and/or more successful route to results. The obtained relief will make it easier to put in the required effort. That’s really nice, but doesn’t qualify as ‘easy’, I think.

8.     Good exercise is not about ‘feeling the burn’ or ‘no pain, no gain’
I was so happy to learn this. Just because I couldn’t do my old routines anymore didn’t mean I was out of options. I just needed a different perspective and stop abusing my body and putting it through routines that only cost me energy and worsened the pain.

9.     My best sources of information are Google, sharing among patients and DIY

This happens to anyone with a rare, or in our case rarely diagnosed and little known condition. Doctors really, really, really don’t like to hear this and strongly urge us to stop doing that. However, as lipedema is still largely being treated and described based on (varying) hypotheses, we simply have a gap or two (three, four…) in figuring out routines and best practices. Doc, if you don’t like me doing this, I get it, but then you’ll need to give me a protocol that covers all day to day issues with proven, accessible, which also means affordable or (partially) covered, options. Until then…

10.  Chronic illness changes your world
After putting others first for years, I was forced to put my own needs first. Talk about rattling the cage! l prioritized differently, lost friends who didn’t (want to) get it and get called lazy and/or selfish (behind my back). l also made new friends and eventually didn’t look upon my changed routines with a sense of loss, but a feeling of accomplishment. Yes, dear ladies, it’s pretty ballsy to swim upstream and stick with it. Chronic illness is not for the fainthearted!

Shared decision making & patient empowerment

October 13, 2016, 2:52 am

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By Tatjana van der Krabben

Names and figures are lacking here and there, which I didn’t get around to copying that day. However, this doesn’t affect the thought behind this blog. Also, the opinions and goals expressed at the congress stem from the Dutch healthcare system with mandatory health insurance and significant coverage as it is, compared to countries like the U.S.A. Therefore, I aim to limit myself to mechanisms and thought processes that translate more widely.

It takes 2 to tango, Duet between patient and care provider, congress by NLNet
Image by NLNet

Saturday I attended a congress on lipedema and lymphedema by NLNet, Dutch foundation for lymphedema and lipedema patients. About 200 people attended, both patients and therapists, as well as a few specialists. However, this time I can’t offer you the habitual overview of new research and insights. The theme was entirely different: It takes two to tango – debates between patients, care providers and health insurance regarding patient care. More specifically: (the feasibility of) shared decision making, a situation where the care provider and patient go over treatment options together and reach a joined decision on the course of action to be taken.

Self-management of chronic conditions

The outline of today’s healthcare for chronic patients is that the main focus of care is on clinical healthcare and only a small portion is reserved for self-management: an upside down pyramid. The aim is to topple the pyramid for chronic patients and make healthcare more so about self-management.

After that statement there was some uneasy shifting in chairs and sharp whispering, because we can all see the danger in that: being sent home with a few tips and tricks, being told to do your best and that would be that. Essentially what we already have when it comes to lipedema. But the speaker clarified that should also imply the majority of funds would also go toward facilitating self-management. Now we’re talking.

The need to shift more toward self-management makes sense to me. Healthcare in hospitals and clinics is largely cookie cutter healthcare targeted at immediate issues and has only so much room to provide individual, long term care. Also, as research shows more and more, a lot of issues can’t be fixed with a pill, a shot or surgery. A lot of it is about exercise, diet, adapting. Things you can and need to address in everyday life.

Shared decision making in health care

Ideally, the care provider and the patient would both go over the different treatment options. The patient would give feedback. Together they would decide on a treatment plan. The thought behind this is that patients feel more content with the outcome and are more inclined to stick with the prescribed therapy as intended when they feel heard and were given the opportunity to voice their own views and experiences.

Reality is a very unpleasant lady

Mind you, to prove the use of shared decision making, research in the context of treating lower back pain was presented. See where I’m going with this? Charted conditions with multiple treatment options are ideal for shared decision making in healthcare. Lipedema is neither fully charted, nor are there multiple treatment options. Well, there are, albeit not comprehensive, but they are not offered everywhere, let alone widely known and covered.

Like many from the audience brought forward there’s another complication. You need empowered patients. When the patient is still in the learning stages, just after diagnosis, it’s a lot to ask of them to provide input on the best course of treatment for them. You also need doctors willing to listen. Not only listen, but also willing to present you with the best treatment options, not push something on their patient. Oh, and time. How often do we feel rushed through our consultations?

Many patients indicated that they felt that a suggested treatment was not always in their best interest. The speaker in question was a little shocked. She saw these reservations in terms of greed and such unethical issues. That was too big a leap if you ask me. I mostly see a more subtle process influencing the outcome of your consultation.
When you see ‘a’ dermatologist, for instance, that dermatologist has certain specialties. Can’t be avoided. Nobody can be trained for everything, even in a relatively limited area of expertise. That and the facilities that clinic may or may not have will  influence the treatment options offered. He or she may have just been trained with a nifty new procedure they think highly of and you happen to walk into the office while he/she is aching to stumble upon a good candidate. He/she offers the treatment. Had you walked into that office a month ago he/she wouldn’t have. Is that bad? Not per se, but things are not that independent as implied. We’re all people, bringing our individual views, training and experiences into the room. This applies to both care providers and patients. The less charted the condition, the trickier this ‘dance’ gets.
I also think patients raising the issue of not getting the best possible care hinted at liposuction. The Dutch lipedema guidelines present it as a last resort type of option. It’s covered only in very few, extremely well documented and severe cases, and only when prescribed by a handful of specialists in the country. Patient perception often is that they’re aware of this treatment option, feel like crap and are convinced that their prognosis with liposuction is much better. Yet, it’s not being offered to them. Not quite the same dilemma as the lower back pain case shown in a video where the options physical therapy and massage therapy were debated, but where the predicted outcome would be pain relief either way.

Evidence based care and Patient Reported Outcome Measurement

The liposuction dilemma led us straight into a new fiery dance: not evidence based. Not yet. Not even manual lymphatic drainage is considered an evidence based treatment! As it turns out the therapists’ best efforts and practical attitude to accommodate us with tailored treatment makes it challenging to quantify what they do. You can’t add up or compare apples and oranges.

Research is key. Here we go again, but the speaker on behalf of the health insurance companies did offer another option: Patient Reported Outcome Measurement (PROM). PROM type of research is about the patient’s experience with a treatment. They evaluate and score the effects. Now, before you bring out your personal spreadsheets, like I know many of you have, this does need to be formalized to make it count. Or else it’s apples and oranges all over again. What happens when you need to formalize stuff? Exactly, our DIY measurements suddenly cost money to make it happen. One of those ‘oh…’ moments. However, the speaker did see room for patient organizations to make this happen. Patient organizations generally move faster than formal bodies and institutions. Also, patient organizations are trained to make things happen on a budget. PROM as a method to gather data on treatment outcomes could definitely be thing.

A doctor’s two cents

That leaves the good doctor. There’s some nuance here, too. Like explained, the doctor can be enthusiastic about a treatment all he wants, if it’s not evidence based, his/her hands are pretty much tied. Like with liposuction in the Netherlands: permission has been given to specific specialists to do a small scale experiment. Those treatments are covered. The experiment status is the loophole here, but only for a very limited number of patients.

I also loved this quote by a doctor: "Clinical experience does not lead to improved communication."

This doctor, not present, only quoted, argues doctors need training when it comes to communication, if we want to move toward shared decision making. A specialist present brought in that we should speak up, not feel intimidated. “We don’t bite”, he said. “It’s not the patients that give me a burn out; it’s the rules, regulations and paperwork.”

This sort of thing is good to hear. The gap between patient and care provider if often not as big as we perceive it to be. Don’t dismiss your doctor before you’ve even invited him to the dancefloor.

What I got out of this day

Research matters. It’s a bit of a pet peeve of mine that a big chunk of the lipedema research is about treatment, while we don’t even know exactly what lipedema is, what causes it and what causes it to progresses. That’s like playing darts blindfolded. However, we need that type of research to get treatments covered or even to have doctors willing and able to prescribe the treatments. We can’t go without any and all treatment until we finally figure out what it is. I see that now. But to sum things up: research. We need more research. We qualify as a ‘small domain’, according to health insurance companies and all those with influence in this debate. We’re not a small domain at all, but, again, we need research to even prove that. 

Research, research, research, or we’re screwed for another generation. Could PROM be a fix for that massive gap we need to bridge? Well, it’s an opening. Until then I largely see shared decision making as a lovely ideal. Because with few evidence based options there’s little to share, let alone to decide. Oh, wait, hold on, more support for self-management for chronic patients is music to my ears. For sure!