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Lipedema is NOT obesity

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By Tatjana van der Krabben

Lipedema is not obesity. It's like comparing apples and oranges. We say apple - or rather pear - to our doctor, he/she replies orange. We've been going around in circles for some time. Some anomalies in our fat cells have already been reported, like hyperplasia of individual fat cells. The fat distribution in lipedema is also very distinct. Yet, we lose our primary at the word 'fat'. There wasn't much else to prove it's apples and oranges, not just oranges. The fact that our blood sugar, blood pressure and cholesterol is mostly normal? Dumb luck and ticking time bomb. Those who did have elevated values? Aha, they proved our doctors' point.

Times are changing. Research is changing. Recently I attended two lectures on studies that specifically compared lipedema and obesity and they found clear differences.

Smeenge, Damstra and Hendrickx found that patients with lipedema have muscle weakness. We have 30% less muscle strength compared to what is considered 'normal'. The obese control group didn't share this muscle weakness. This is unpublished at this point, but you can find a summary in English here.

Hoelen, Van Zanten and Bosman looked at the value of ultrasound as a diagnostic tool in lipedema. Again, in the control group obese women were included. I've seen the slides at the lecture in May. It doesn't take a medical background to spot the differences between the scans that were showed of a person with lipedema and of a person who is obese. Also, it was found that the BMI of lipedema patients doesn't match the circumference of their waist; it was smaller than you would expect based on the BMI number. Meaning: BMI doesn't add up for lipedema.* Again unpublished at this point, but you can find some information on this research in English here.

Lipedema is NOT obesity and some proof of that is finally coming our way. Why is that such a big deal? If you are on team obesity, you are, but if you're not, they should be looking at the issues you DO have, not what they assume they would be. They can't help us or think with us, if they don't see us for who we are.

In all fairness, I've seen studies in the past pointing at lipedema-specific pathology, but these studies are all but forgotten. Fingers crossed these studies get the attention they deserve and stick.

*Get in line, because BMI doesn't add up for a lot of different groups of the population. Also see my blog on BMI.

Living With Lipedema - Visiting Downtown San Antonio

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A few weeks ago we took my mom's advice and decided to visit downtown San Antonio on a Sunday. We actually took Sunday and Monday in order to take advantage of the hop on / hop off tour from downtown. I was hoping we could catch the trolley at one of the missions near us, but after calling the company to confirm this idea it was out - we had to brave our way downtown.

I do recommend going on a Sunday. The traffic wasn't too bad and we were able to find parking.

We bought hop on / hop off tickets for the Alamo trolley on Sunday and got our second day passes for Monday. It was late afternoon so for this first trip around we just road the trolley for the one-hour tour and decided where we wanted to go the next day. 

The trolleys were all handicapped accessible, and that's important for those of us with more advanced lipedema. If you're traveling in a wheelchair or scooter, all the trolleys had wheelchair lifts. Some people got on the trolley then sat in a regular seat after boarding. Others sat in the back of the trolley in their chair. 

 We toured the Alamo that evening then came back for the downtown trek on Monday.

Our first stop was the King William neighborhood. We had an hour in this historic neighborhood. We walked past several historic homes and passed a few that were open to the public and made some plans to return on another day to tour the homes and grounds. We also walked along a portion of the RiverWalk, an 18 mile stretch of bike and walking paths that lead from downtown San Antonio along the river towards the missions outside of town.

The Riverwalk is very wide, accepting wheelchairs and powerchairs easily. However, not all access points to the walkway offers ramps for easy ingress / egress. There are maps of the Riverwalk so you can see what areas have handicapped ramp access available. 

We also visited Mercado, an indoor mall with several interesting Mexican imports. We're planning to go back for Christmas gifts. Then we hit the Main Plaza where we walked along the riverwalk some more.

One of the highlights was our boat tour along the river. As Bexar County residents, we even got a discount on our ticket. The sun was setting and the day was cooling off - the perfect time to be on the water. We saw several places we're looking forward to visiting on another trip and we learned a lot about the downtown area and the river. And I'm thankful that the tour guide mentioned getting to Hemisphere Park via the Riverwalk - a quick 5 minute walk and we were there instead of a 20 minute walk on the busy streets above.

The website for San Antonio Cruises says all boats are ADA accessible. Be aware that the boats can be pretty crowded. As you can imagine, they want to fill every seat. There are handrails for stepping in and out of the boats and the steps weren't too steep. 

We ended our day of sightseeing walking through Hemisphere Park, the site of the 1968 World's Fair. We walked over to the Tower of the Americas but didn't go up. It's on our list for next time. I did make reservations for a birthday lunch at the Chart House restaurant, a revolving restaurant at the top of the Tower.

Some tips for traveling downtown:

Parking - know where you want to park. All lots have a fee, but the ones run by the city are less than a private lot. If there is an event going on the parking may be more than listed. I started with the BestParking.com website and found a lot near the downtown area where we needed to be. It was a city lot and cost $2.50. We'd originally paid $10 to park on Sunday, so knowing about these other lots was definitely worth it. The website gives the address of the lot and I found it easily using Google Navigator on my phone. If you're staying in a hotel, walk downtown if you can or see if your hotel offers a shuttle into the area. If you need handicapped accessibility, be aware that some of the cheaper lots may be several blocks from downtown. 

Wear good shoes.

Restrooms can be difficult to find. On Sunday there were portable toilets set up but they were gone on Monday. If you're a paying customer, you're welcome to use the restrooms in the businesses downtown, but many have signs stating that there are no public restrooms. 

Check out the rest of the pictures from our Alamo / San Antonio trip in the album on DropBox.

What to consider when searching for a surgeon to perform liposuction

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This blog could never cover everything relevant, but it's a start, coming from personal experience and what else I learned along the way. I do not recommend liposuction. This blog does not provide tools to assess whether you should have liposuction. However, I receive many questions on where to start when considering liposuction and in that context I offer this information as food for thought. Preferrably, in an ideal world, you would be going over these issues with your informed doctor, or better yet with a specialist in a multidisciplinary institute, where they could answer all your questions and offer the treatment when considered a good candidate.

Learn what exactly you are looking for.
Liposuction, liposculpture, WAL, PAL, tumescent: are you still with me? It's ALL liposuction. All of it. And it's all tumescent. I love this quote of dr. P. Aldea:
"Tumescent liposuction is nothing but the universally performed pre-liposuction infiltration of the fat to be suctioned with a dilute solution of a local anesthetic (lidocain, marcain etc.) and adrenaline (epinephrine) which increases the accuracy of fat removal, largely reduced blood losses AND increases patient comfort."
Source: http://www.realself.com/question/tumesecent-liposuction-general-local-anesthesia

As dr. Aldea puts it: the anesthesia is supplemented. Meaning: tumescent infiltration of the area to be suctioned is a given, but the type of anesthesia is a matter of choice. But mostly not the patient's choice. I'll get back on that.

PAL, WAL, UAL, LA etc.
Along with tumescent, there often are additional specifications regarding the technique a surgeon applies. They can use a specific suction device like Power Assisted (PAL) or apply a thin water beam to help losen the fat from the tissue: Water Assisted Liposuction (WAL). There are more flavors out there. I highlighted PAL and WAL, because lately these are frequently mentioned on patient forums. However, as you can read through the link, these are not the only options.

As you can read they all are presumed to have their merits and do something specific to spare the lymph, do minimal damage, minimize risk etc. Ask a surgeon which is best and you'll get an answer. Ask another surgeon and you'll get another answer.

As a layman I noticed the difference of opinion between professionals and let it be. A certain surgeon prefers a certain technique. Well, apparently that technique suits him/her best. My personal choice was to get over the various terms which I could only ever understand superficially and looked at the surgeon's track record instead: knowledge of lipedema and years of experience. After all: the tool doesn't define the result; it's the surgeon's skill in using the tool.

Note: there's more research out there now compared to the time I had my procedures. If you want to know more about a particular technique and how it works compared to an other or the "plain" technique, there's far more information to be found. Go straight for the "boring" stuff: formal publications, in order to avoid information designed as a scientific-looking piece of marketing. The quickest way to cut to the chase is to search through Google Scholar. It only contains scientific publications.

Plastic surgeon or cosmetic surgeon
A plastic surgeon is trained in hospitals by professionals and has completed related residencies. Cosmetic surgery is not taught through residency programs. Doctors seeking to learn cosmetic surgery typically get their training after their residencies. This pretty much means a doctor would need to organize his/her own training and has a certain freedom the raise the bar to his/her liking. Cosmetic surgery is practised by doctors from a variety of medical fields. Read more about the differences here.

However, deciding between a plastic surgeon or a cosmetic surgeon based on the title only is a trick question. Plastic surgery does NOT equal (knowledge of) liposuction. There are numerous specialties within plastic surgery. Plastic surgery is first and foremost focused on reconstruction of defects due to disorders you are born with, trauma, burns and disease. Lipedema qualifies as a 'disease'. Care to guess how many hospitals acknowledge the condition and offer liposuction as a treatment option? Few. Very few. As a consequence there are few well-trained and informed plastic surgeons out there. For reference: tumescent, which is raved about as a major improvement to liposuction surgery, is invented by an American dermatologist, dr. Klein.

When considering a surgeon you best look at expertise and experience. While you're at it, also look at client/patient reviews. In that context, beware of posers, pretending to be content patients. In the past some clinics have used this despicable method to lure clients. It may still occur...

To improve cosmetically or to improve mobility and reduce pain
This is not about starting a debate. Your body, your choice. It's just very important to find out where your priority is and whether that priority matches with the surgeon you're considering for the job. It's not either/or per se. It can be a little of both. But trust me: there are surgeons out there with a 100% focus on mobility and they will NOT be open to a post-op debate over looks. Even when the result is very uneven and/or irregular. There's also the patient who, in her heart, wants killer legs (back). Again, not judging. Just make sure you set out for a realistic goal with a surgeon who is able and willing to help you strive for that goal. Strive, yes. We're quite the canvas to work with. It's no exact science.

You want a good or even super cosmetic result?
Ask. Ask for pre-op and post-op pictures of women much like you: size, build, with lipedema. Don't let the surgeon just show you his/her best work ever on young ladies with little excess fat and lovely elastic skin. There's skin elasticity and the condition of your connective tissue to consider. Ask about your personal possibilities and impossibilities and, if needed, try to adjust your expectations. It's better to know before than after when there's no going back.

Look for a surgeon with knowledge of lipedema
Typically, those seeking liposuction for purely cosmetic reasons need to have little fat removed. It's not designed as weight loss surgery. Many surgeons even refuse to operate when the BMI is on the high end. Many of these surgeons commonly remove 1 liter, maybe 2 per surgery. A drop in the bucket for most of us. We need someone who can and will remove more.

He/she would have to be aware of the fact that we need to be especially careful with our sluggish and sometimes already compromised lymphatic system. As well as: possible poor skin elasticity, weak connective tissue and possibly slower healing.

General anesthesia or local
General anesthesia in itself poses a (small) risk, on top of the risks inherent to liposuction. You can draw the line there or you can reason that didn't stop you in the past to, say, have your appendix removed.

General anesthesia burdens your body. When I insisted on general anesthesia myself in an entirely different procedure, my surgeon warned me it would take me more time to recuperate afterwards compared to undergoing the same procedure with an epidural. It simply adds to what your body needs to process when healing. Local anesthesia is also favored by some to have the patient able to move and, if need be, stand to assess the evenness of the result. On the other hand, the prospect of enduring the procedure wide awake can be stressfull. Maybe too stressfull for some.

If you are to opt for general anesthesia, you may need to look a little harder for a suitable surgeon. Many clinics can't or won't offer general anesthesia. It requires additional facilities, knowledge and assistance during the procedure. If not that, some surgeons truly want you awake to monitor your wellbeing themselves and have you participating by moving during the procedure.

Pre-op and post-op care
What is being checked and looked into to dertermine you are a suitable candidate? Is it thorough? Do you have a good feeling about this? Do you know the basics and were provided with information on how to prepare for the procedure, what to expect and how to arrange care post-op? How can you reach the clinic when you (feel) you need to? What if post-op complications arise? Who covers these expenses? Where can you turn to? This is particularly relevant if your surgeon is far from your home and you travel back soon after the procedure. At the same time: don't wait to be asked about specifics. Share your medical history and use of medication in detail.

Do inform your primary, even if he/she doesn't support the idea. Make sure they understand what you embark on so they can help in case of problems.
Obvious stuff? Sadly no. I still read about questions like: "Is it normal to still have swelling after a week" and "Is it normal the cuts ooze". That's basic stuff. You should be told about this sort of thing in advance.

Insurance
In rare cases the procedure is covered. Ask around on forum if someone from your country managed to get it covered and what they did. Even if the odds are slim, consider trying. Health Insurance companies need to become aware of lipedema and liposuction as a serious treatment option.

Also, think how far you want to take this. Going ahead with the surgery while still butting heads with your health insurance may ruin your chances of coverage. It may also lead to a road where you can't have the procedure done by your surgeon of your choice. Ask around. Patient forums on for instance Facebook are a wonderful source of practical information.

Is lipedema hereditary?

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By Tatjana van der Krabben

Is lipedema hereditary? Interesting question. For starters, that is not proven. Yet? Another interesting question. If you ask me to speculate I wouldn’t go with hereditary full stop. And here is why.

Despite it often being quoted, lipedema is not a proven hereditary or genetic condition. Read the fine print; papers mostly say something like ‘possibly hereditary’ or ‘in part’. With family members displaying symptoms, one generation after another, going against the hypothesis of it being hereditary seems rather futile. Also, I can hear you gritting your teeth from here: “Is she implying I brought this on myself?!” Rest assured, I’m doing no such thing. But here’s some food for thought.

Regarding lipedema there are many assumptions going around. About percentages and numbers of women having it. Mostly 1 in 10 or 1 in 11 is mentioned to state the urgency of the matter. Sometimes in relation to a country or continent or even the world. Again, not proven. Worse, that’s just one estimate. Child et al (2009) came up with a minimum estimate of prevalence of 1 in 72.000. Those estimates are worlds apart. In a recent lecture dr. Damstra, a Dutch specialist, mentioned its occurrence in Asia is genuinely rare. So 1 in 10 in the world can’t be right. 1 in 72.000 sounds way to conservative to me; on an average summer day on a beach or in a theme park I encounter several ladies with lipedema. My point? Keep an open mind!

Am I playing it down? No. I believe the matter is actually getting more urgent. This is why. I’m coming from observation and am just hypothesizing, but the generation before me usually didn’t experience serious issues until menopause or a hysterectomy, often despite multiple pregnancies. As in, of course in retrospect there were some signs before, but their functioning was hindered only so much until then. My generation mblmmmb (read: forty-ish) experienced undeniable symptoms when pregnant. I now see girls still in their teens with stage 3. I also hear of more and more men getting diagnosed.

My generation did without junk food to mention of until our twenties. Soda bottles were made of glass until I was fifteen-ish and snacks and treats were limited to weekends and parties. I feel like we are the transitional generation in this picture. Of course in part this is the same debate as with autism and ADD etc.; is it getting more common or are more people seeking and getting help/diagnosis? No doubt more people seeking medical help has something to do with it. Something, but not all. I honestly see lipedema getting worse faster and faster.

Fact: the population as a whole is getting bigger. Fact: we get less exercise then we did in my grandmother’s day. Fact: our diet has changed tremendously from seasonally limited options and whole foods to mostly processed supermarket ‘food’. And here’s the thing we all know: let the average girl switch to granny’s whole foods and some exercise and her fat will melt away and with us not so much. Well, definitely not all of it. Also, we tend to gain faster eating the same type of food in the same portions. So, I’m leaning towards part circumstance and part predisposition. That would also explain how some manage to get virtually symptom-free by changing their lifestyle. If it’s genetics only, that would be rather strange, to say the least.

I’m not pulling a rabbit out of a hat here. Several researchers are hypothesizing along the same lines. This theory is telling me two things:

1. We run the risk of having an explosion of lipedema with young teens taking birth control already, supermarkets being the main food source for most which offers little whole foods and the increased digestion of xeno and phyto estrogens.
2. There’s a point to looking at circumstance and lifestyle. Change for the better what you can. Reduce inflammation, keep moving. Many are already travelling down that road with (some) success.

So, no, you are not to blame for developing lipedema. We all get caught by surprise, but please stay pro-active. It’s about quality of life. We all want it to be the best it can be. Right?

Lipedema and eating disorders

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By Tatjana van der Krabben
We sometimes read or hear about lipedema and eating disorders. Over time I encountered several ladies who had an eating disorder in the past. We know it’s there, but for me personally it was more like background information. A little surreal.
Today, on Twitter and on a forum I heard about a woman with lipedema who had developed anorexia. She lost the battle. Today it became more real than ever. Too real…

We all know what lipedema does. It takes nothing (much) to gain, but it takes blood, sweat and tears to lose weight. And you don’t get to lose it where you want it gone or to the point you want to lose it. At the same time many of us get encouraged to exercise more and eat less. Even by medical professionals and even if that is not realistic or what is truly needed. This is a red flag, people. A big one.
I got tempted to speak of support groups in this blog, but the truth is that eating disorders are a league of their own and very complex. Which leaves raising awareness, so people at least have a chance to learn about this piece of their health puzzle early. It’s good to see more and more lipedema patients are stepping forward and sharing their experiences.

Here’s to hope.

Immobility in Lipedema

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by Maggie McCarey

    When lipedema support first began via forums, one common topic was the immobility that often accompanies lipedema in later years. The forum thread invariably evolved from a conversation that began: I am going to do everything I can to keep myself out of a wheel chair. Over the years, immobility has become less and less  common to forum discussions, even though reduced mobility and even immobility are possible outcomes of lipedema. Do we talk less about the wheel chair because we fear it, or because, as younger women join our ranks, the emphasis is more often about cosmetic solutions?
 
Frankly,  that an undiagnosed disease causing women to become wheelchair bound exists, is still flabbergasting to me. Yet, it is true and fearsome and raw. In the years I have been in the lipese community forums, immobility has been pushed further and further away from our awareness. Perhaps, it is time to ring the alarm again.  Lipedema sometimes causes immobility!

   I have sought at various times to compose a chronicle of events leading to my immobility. Because this inordinately slow progress is unnamed and unknown, our personal aha moments are seemingly random rather than progressive, making the timeline difficult to recreate so please bear with me.  
    
My Immobility Timeline
 
1951: I am born in a hospital bed with no one in attendance to steady my head and hold my neck against injury.  Why is this important?  Many spinal birth defects are caused by an unattended birth.

1953: I whiz down a slide so fast I go airborne and hit the slide’s edge at the bottom.  I am diagnosed with a compressed lumbar region which takes weeks to heal. 

1956:  Though I am hyperactive physically, I can do no gymnastic moves without injury and throughout all of my schooling K-12 l am exempt from gymnastic moves in P. E. 
 
1956-60. I unconsciously learn to adjust my upper body to compensate for the lack of flexibility in my lower body.  I fall often.  My legs ache at night.  I am never without pain.
 
1961: I am diagnosed with Perth’s disease. (Its symptoms:  The child may show signs of limping and may complain of mild pain. The child may have had these symptoms intermittently over a period of weeks or even months. Pain sometimes is caused by muscle spasms that may result from irritation around the hip. Pain may be felt in other parts of the leg, such as the groin, thigh, or knee. When the hip is moved, the pain worsens. Rest often relieves the pain. http://orthoinfo.aaos.org/topic.cfm?topic=a00070).  I can bear no weight for 6 weeks.  
 
1966:  I discover tennis.  I play daily and win all intramural tournaments but fall easily against my ankles because my body cannot twist.  My first conscious adaptation occurs when I jump high to meet the ball and then depend on my feet to land my jump after I twist my body midair   back to center.
 
1970’s:  I cannot easily carry my children up and down stairs or for more than a block. I am never again able to carry weight on my back, i.e. backpacks, children in baby carriers, etc.
 
1980’s and 90’s: I work out incessantly, leaving a fitness center to come home and do my nightly exercise protocol, including resting my body on one knee and bringing the other leg straight out to the side, then swinging it as far forward and back as my hip allows, 50 times each leg. I do this for the next 30 years.
 
1981: I can no longer wear heels of any kind by age 30 without causing weakness in my back..
 
1985:  Even though I am thin, wearing a waist band in pants and skirts causes my lumbar region pain.  I first become aware of the weight of clothes when I put them on.

1987: My hips become inflamed and stay that way for 6 weeks without explanation.
 
1990-2: In Nome, Alaska, I experience almost zero humidity.  I have little to no pain but when I leave Alaska for the last time, my daughter asks me to jump rope with her in Anchorage,  and my body refuses. I realize then my “structural distress” has progressed and that I may have a disease.
 
1994:  Homesteading, carrying bags of grain, planting trees and in good health, I begin to notice that I cannot get out of my favorite old rocker easily, and I often used upper body weight to push myself up out of every chair. 

1996:  I buy a treadmill but when I use it my knees give out. So, I create a walking trail in my sanctuary but after awhile, my right foot doesn’t lift as high as my left, and it catches on carpet while I walk.  I discover uneven terrain, and I miraculously begin to hike many miles a day.  I stay in great shape, walking and climbing mountains daily.  However, I can only walk  this distance with loud music playing in my ears.
 
2000:  I walk at least 3 miles everyday.  I am in great physical shape.  I cannot get up from a sitting position on the floor.  I cannot walk up a stairs without holding onto a railing.  I cannot run downstairs sideways.  I  can swing into the cab of my husband’s truck, but every move is played out  in my head before I execute it.
 
2001:  I walk up and down stairs and along trails by dragging my right foot and swinging it outward almost without detection.  One day my husband says, “Do you know when you walk up a stairs you bring your right foot from behind and then swing it forward?” I didn’t know until then.  
 
2002:  I cannot get in and out of church pews or movie seats.  I avoid couches and soft chairs.  I begin to spec out steps and their height when going to an unfamiliar place.  I avoid going to the hospital to visit my congregants unless I have to because the walk on concrete creates lipedema pain, which has become more identifiable and less manageable every passing day.  I find ways to fall back onto small toilets and to pull myself up from nearby sinks. I still walk many miles a week but I can no longer lift myself out of a bathtub from a sitting position.
 
2003:  I have a huge stress-related event which precipitates a total structural collapse.  I don’t walk for months.  I shuffle.  I don’t remember now how I manage to keep working. I walk with the sensation of wearing sweat pants filled with sand and walking in water, no pain. Gradually, I walk again.  I don’t know how or when I started walking again as I just push my body along anyway I can until it remembers. I am in peri-menopause.  Every month or so, my lower back goes out for two days before my period and I can barely use my right leg until the moment my period begins.
 
2004-2008:  Remission but no longer walking more than a few blocks at a time.  I work two jobs, both requiring major mobility and I manage, now in constant burning leg pain, which goes away when I sleep. I awake pain free until I walk.  I can no longer get in and out of compact cars.  I move to a new church with an elevator.  They put in a new handicap accessible bathroom downstairs in the parsonage because I cannot go upstairs, even one leg up sideways, my last stair adaptation.  I go to Guatemala with feet and legs hugely swollen—a trust journey.  I am so swollen, I need an extension to buckle my seat belt on the plane.  I return a week later, twenty-five pounds lighter, and I am able to stand for an hour without pain.  I feel restored as if I had never had a problem walking.  I determine to walk up and down a steep hill outside my house.  Within 3 days, I am back to my pre-Guatemalan state.  I cannot walk and my body swells.  The pain in my legs at night is again unbearable.

2009: This is the first year in a long while that I am very overweight.  I get less and less medical care because my immobility can be blamed on my weight.  I complain about my back and I ask my doctor for an MRI.  She calls me with the news that for my age my back is remarkably preserved. Amazing in fact. Two more specialists see me and say I am food non-compliant.  I get so bad, I walk with a walker.  I do weddings and funerals sitting on the seat of a walker.  No doctor monitors my increasing immobility. I have to lose weight if I want their help.  I recognize women who walk exactly as I do.
 
2011:  I am on permanent disability.  My knees are bone on bone, and if I have knee surgery, my specialist says the risk is so high for amputation, he will not touch them.  My weight is once again under control, manageable, stable.  I lose 4o pounds with no change in my walking.  I trade the walker in for two Canadian canes and I am somewhat mobile again.
 
2014.  Not much change except that my remarkably preserved back continues to seize on me when I stand for any length of time. My habitat becomes smaller and smaller. I seldom go to a show now.  I shop once in awhile, and I still keep my house presentable between my housekeepers’ weekly visits.  Because I am no longer flexible, falling comes easier. I am no closer to a wheel chair then I was in 2009, except those random times when a knee gives out or I injury my leg in some way.  On these occasions, I remember things I have lost, never to be found. I remember the chancy evil eye who teaches me about the fragility of life. I remember to fear the worst.

Then I dream I will walk again.  And so it goes.

Ditching the stress

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By Tatjana van der Krabben

I used to focus on every little change the lipedema made on my body. I mourned what was lost. I mourned once more when I realized some things were lost forever. Through liposuction AND lifestyle changes I reached significant improvement, but I still have lipedema. Very much so. The children kept me extremely aware of my being different: Mommy can’t do this, mommy can’t do that, if I do that I hurt mommy. I considered a change of career, but couldn’t see how I could face the challenging course work  and then the work itself. Simple things like travel, long hours, much walking. Despite my significant progress I still felt limited and a little frustrated. And I still retained water regularly.
Little by little things changed. No matter how sweet the kids were in their efforts to help me, their response was prompted by the signals I gave them. I didn’t want them to treat me like an invalid. Because I’m not. Or worse: a victim. Yikes. It was up to me to make the change. For them I made the effort to point out what I could do and drop the fat vs skinny issue. I never, ever mentioned anything about being fat again. Mommy doesn’t eat certain things, or rarely does, because it’s bad for my legs. Period. Mommy gained a cool factor taking them in fast moving and spinning rides and became the dare devil who swims with sharks. The kids need a role model, not someone to pity.

Little by little this became the standard. My life became less and less about lipedema. I stopped measuring my waist daily. I went from stepping on the scales three, four times a day to once a week or so. When I heard about Ketogenic eating, I got tempted, but left it, because that required counting carbs. I don’t count ANYTHING anymore when it comes to food. No calories, no carbs, no scoops, grams, spoons, nor will I follow a fixed food plan. I learned that food restrictions act like a stressor for me and I’m staying away from that, because stress gives me cravings. I focus on healthy choices, although not exclusively, enjoy what I eat and only eat when hungry.

My last hurdle was my career. I loved to write, yet I felt that it was a choice I made for lack of options. It took me a while to realize, but all the other ideas for career choices I have dropped not just because it would be too challenging. Truthfully, I didn’t want it bad enough. Because if I did, I would go the extra mile and it wouldn’t feel like going the extra mile. I love to write. Long hours rarely bother me. Exactly because it doesn’t feel like pushing myself. It took me a while to see that. It dawned on me when working on a novel at night on top of everything else. I didn’t waste any more time and started my own business as a professional writer and translator.

Sometimes there’s a new challenge. Peri-menopause came knocking on my door frightfully early. I got hideous carb cravings and gained a little over the last few months. A first since liposuction. That stings, I can tell you that. After going through 4 surgeries and the cost involved, gaining is frightfully frustrating. I had hoped to have a few more years without this fuss. For a while I got fussy with the scales and tape measure again, but I’m regrouping. The stress is fading again and so is the pain in my legs. Even when I don't eat perfectly. To me that’s no coincidence. It’s sometimes difficult to step away from stress, but it’s definitely worth the extra trouble to try and break free of it.

Liposuction – short term or long term fix?

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By Tatjana van der Krabben

Liposuction is not a cure for lipedema. Been there, done that. Buuuuut….how long will you be able to enjoy the benefits? Snaky question, which I don’t have an answer to. All I know is, that it could be much shorter than anticipated.
I’ve blogged about the fat sometimes returning fairly soon in individuals. This week an articlefrom The New York Times from May 8, 2011 was brought under my attention again. It’s disturbing: in a year fat was regained. Be it elsewhere, but fat was regained. Oops. I also stubbornly insist you CAN regain at the locations where the fat was sucked away. You can. Many have.

Where does that sit with the (few) long term studies on liposuction in case of lipedema? Quite well, actually. It’s a story of give and take. A case of “yes, but”. The body appears to be fond of storing. In lipedema we took this to the next level. And some, if you look at patients in stage 3. With liposuction we “steal” fat from our body and the little hoarder that she is will work overtime to “fix” that. Bring on the inflammation. We’ll get you gaining at under 1000 cal. a day. Ha!  
Yes, but. Thankfully there’s a “but” in this. You can counteract inflammation. You can attempt to crack the code to your body and figure out an eating and exercise plan that works well for you. Balance the stress, tweak some here, tweak some there. More and more of us manage to trick our bodies out of hoarding. At least between hormonal highs and lows. When the hormones shuffle, we are, alas, riding shotgun. Screaming “stop!”, praying the hormones will listen and hit the brakes.

The cases in my mind, where fat came back at a cruel pace involved women who were close to hormonal changes or didn’t change their lifestyle. And perhaps it also is of importance how much is removed. It has been implied – not researched – that, in order to tip the scales and change the balance properly for the patient, a significant amount of fat needs to be extracted. I wouldn’t be surprised, although clueless how to define “enough” and “too little”. (Can I make another request for research? Put it on the list, please.)

So, when considering liposuction, it doesn’t hurt to ask yourself if it would still be worth it for you personally if you could only enjoy the new optimum for, say, 5 years. It can be. Like with me. My kids are small NOW. I wanted the extra energy to start a new career NOW. I have this new window of opportunity that I obviously want to last and last. Every year in my present state counts. I make it count. It will be disappointing when I get pushed over to the passenger seat and watch the hormones take hold for a while again, but that’s the risk. I was willing to take it.
I bring this up, because for you it could also be worth it, but you need to know to take a proper decision. Maybe you’ll decide to wait, until after you have a family. Or not. Maybe you secretly hoped lifestyle would be less of an issue after liposuction. Sorry, no. Essentially you’re buying time. Make it count.

Gastric bypass, please be gone…

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By Tatjana van der Krabben
I’ve been holding off on writing this blog for a few years. I’m biased. I’m biased because I’ve watched a close friend – as well as others – being reduced to shadows of their former selves after gastric bypass surgery. So, at this point, having watched them going through hell, knowing there is NO way back, because it’s irreversible, there frankly are not enough successful cases in the world to make me change my mind.

Lately I’ve noticed quite a few lipedema patients are being referred for gastric surgery. Also having serious, objective points of consideration on the subject, I feel I need to come forward. So please excuse my lack of nuance this time around.
1.       Referral is usually because of suspected obesity
Lipedema is not obesity. It’s not caused by overeating. The whole motivation behind the referral stems from a false mindset. When bringing up their concerns and questions regarding weight loss specific to lipedema limbs doctors a. turn out to be oblivious about lipedema, b. don’t respond to patients who indicate they eat little as it is. Eerily, when presented with this additional information, the recommendation usually still stands. I’ve never heard of a doctor taking it back.
As for results: reduced leg size is reported, but it doesn’t take the lipedema away. That’s because calorie restriction doesn’t fix lipedema.

2.       Gastric bypass surgery equals malnutrition
With the stomach reduced to an unnaturally small size and the small intestine being shortened, you will be unable to digest enough food to sustain yourself. I’m talking nutrients here, not fuel to prevent you from burning fat. You will need to supplement. That’s a given. Especially B12, calcium and iron are a problem.

3.       But you already needed to supplement?
You have lipedema. B12 quite possibly already was a problem. And some. Even when supplementing it can be challenging to keep symptoms of vitamin and mineral deficiency at bay. Gastric bypass surgery will add to that challenge.

4.       Do you need it?
Lipedema can coincide with eating disorders and/or obesity. Fair enough. But the whole procedure is created around the assumption you are overeating and unable to restrict yourself to the point you can bring your weight down. But many of us actually eat very little if not too little as it is. Suffer from undiagnosed thyroid problems. As already indicated, lipedema is not caused by overeating. If you don’t overeat, what is the point?

5.       Surgery damages the lymphatic system
Every surgery impacts the lymphatic system. Gastric bypass surgery is rather invasive. In lipedema management damage to the lymphatic system is not exactly welcomed. There’s no research on this issue. Most likely the surgeon involved doesn’t know about lipedema. Then who will advise you properly on this particular aspect?

6.       Gastric surgery doesn’t fix everything
Gastric surgery ensures reduced portions food-wise. It doesn’t cure inflammation. Only the type of food you eat can help in that department. It doesn’t prevent you from making poor diet choices; you could still eat pudding all day long.  It doesn’t fix an urge to soothe yourself with food; whatever underlying issue has triggered that need, won’t go away.

7.       Is it ethical?
Is gastric bypass surgery ethical? I wonder. Presumed healthy tissue from the small intestine is removed. Now I’m this nature freak, true, but isn’t it odd to remove parts of a healthy organ? Also, the stomach is being reduced to such a ridiculous small size, you can’t digest enough food to provide yourself with enough nutrients. Especially with the reduced intestine, which you need to absorb vitamins and minerals. You essentially get rewired for malnutrition. And it’s irreversible. Frankly, I can’t wrap my head around this package deal.

I’m not getting into risk of complications and the mortality rate. Like I said: I’m biased. Every surgery has its risks and statistics vary per conducted study and clinic.
There are other options. If you are willing to consider bariatric surgery, it doesn’t have to be a gastric bypass. Gastric banding is far less invasive, less connected to vitamin and mineral deficiency and reversible if need be.

Lipedema and Low Impact Exercise

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By Maggie McCarey

     Contrary to popular belief, exercising to lose weight and to stay healthy is not a new idea.  Folks have been promoting exercise since I was a kid six decades ago. President Eisenhower established the President's Council on Youth Fitness on July 16, 1956 with a committee recommendation that all Americans be state mandated to exercise.

      Most of us from 1956 on engaged and continue to engage in physical fitness endeavors. Go Baby Boomers! Unfortunately, America has been on a slow learning curve regarding how much and what kind of exercise is needed to maintain health.  More was always thought to be better. On this curve,   I depended on a ridiculous amount of exercise and starvation to maintain a semblance of normalcy for most of my adult life.  Many of my friends, who don’t have lipedema,  also used over-exercising, particularly running,  to maintain their vast calorie intake and at the same time to remain thin.  All of us, male and female, thin and fat, over the age of 50,  have reached the same conclusion. We have had to relearn, rethink, and rebuild our exercise plans to compensate for our bodies’ aging process.

       Doing lots of exercise is great until your first serious injury occurs or your worn-out knees finally refuse to be abused. Everyone who depends on over-exercising to maintain weight is one twisted ankle away from total collapse of  his/er way of life.  I know. I and most of my friends have been there.  My best skinny friend, ran 5 miles a day for years.  In her mid-50’s, her back wore out.  She had disc surgery and then rotor cuff surgery.  She then moved to low impact swimming and bicycling 20 miles a day in order to eat all of the sugary desserts, pastas, and rolls she wanted.  Her back went out again and her leg with it. Now she can no longer ride her bicycle and she is a Joan Osborn cliche: Just like us because she used exercise to maintain an unhealthy lifestyle until her body gave out. Food intake and exercise are not synonymous. The reason  compulsive exercise is not okay is because you don’t get to the finish line with it…ever…  and then you still have to learn to eat what your body needs.  

     The same day you learn that you have lipedema, you learn there are only two things that medical professionals agree on about lipedema. You learn that you cannot exercise or diet your lipedema fat away and you learn that you must continue to diet and exercise to maintain what health you have. You also learn on every site about lipedema that exercise MUST be low impact. This is logical since our knees are often damaged and worn away from puberty onward with hyper mobility and connective muscle tissue that does not properly protect our joints. 

     So what are low impact exercises?  Generally, they are walking, cycling, rowing, swimming, and elliptical training.  Running is not on the list.  Now to really blow our minds, some exercise gurus are beginning to agree that exercising is fun, if that’s what you like to do, but it doesn’t do much for weight loss beyond a given point. Two experts, British medical doctor Michael Mosley and Australian exercise physiologist and associate professor at University NSWS, Steve Boucher agree that limited, targeted exercise 3 times a week is best. Mosley recommends intensity exercise bursts of 20 second intervals for one minute, three times a week to increase aerobic fitness and ability to process glucose. Boutcher’s clinical trial concludes 20 minutes of intense pedaling on an exercise bike three times a week is the best exercise for good health.  He says:

"Diets do not work in the long term for the great majority of people; the stuff we want to lose is the stuff we can't feel - it's devilish," Boutcher says, “of the insidious visceral fat that surrounds our organs but doesn't always protrude externally as a worrisome girth."

He suggests that removing stress and sleeping better are just as important as exercise and diet in maintaining weight1.

      Of course, every article I read while researching for this blog suggests that walking at a good clip is the best exercise for everyone. For me, even my walking days are over thanks to my compulsive, high impact exercising, but I still exercise, because when I stopped walking well, I was taught by a physical therapist to exercise every day before I get out of bed.  I target the areas I want to exercise, tighten my muscles for ten seconds in those areas and then release. Belly, thigh, knee, full body presses: tighten and release  You can do leg lifts, stretches, and side rolls.   You can sit at your computer, lean back slightly and exercise your butt and upper legs, ten count, release, and then take a deep slow breath in and out.  You can move any muscle in your body, including your heart to increase cardio-vascular strength via deep breathing and yoga techniques. You just tighten your target muscles the count of 5 and release, repeat 3 times and move on. It gives the same return as regular exercise because these intense bursts release glucose effectively and they aid NO (Nitric Oxide) production and flow, which is nectar for the muscles.

     You don’t need to push body weight down, around and over your muscles to properly exercise them, and now, apparently, this no/low impact exercise also helps you to lose weight. You can gain the same results on low impact and keep your body intact into old age, something I wish I had been told in time.

 

Will lipedema remain focused on treating symptoms?

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By Tatjana van der Krabben

Lipedema is poorly understood. That much we know. We gain, we hurt, we swell and deal with inflammation. That we know, too. New research sometimes allows us to catch a glimpse of what is or could be behind the veil. Best examples I know of at this point is by Szél et al (2014) Pathophysiological dilemmas of lipedema (abstract) and by Bosman et al (pending) Prospective controlled study to determine the use of ultrasound in lipoedema patients compared to obesity, which reveals distinct characteristics in our connective tissue.*

But these glimpses are rare. Extremely rare. Most papers are still about liposuction or what lipedema looks like, including overviews of traditional treatment options. I know you can never get too sure about surgical intervention and within that area of expertise much is being learned still, about treating stage 3 lipedema, differences between types of cannulas and techniques etc. Most useful. Of course.

But still… With liposuction getting most attention and being presented in the media as a cure sometimes or the only effective treatment, a situation of supply and demand is being created, where patients place their money – literally – on liposuction. It’s becoming the thing to do and the thing to want. The next step, which is already becoming apparent, is that treatment becomes about liposuction.

I would like to see it as a tool in a toolbox that, like any toolbox, contains more useful tools with room for more and new tools. New tools, less invasive hopefully, and, dare I hope, even more effective, will not be found unless there’s a supply of data. But before there’s supply, there needs to be demand. We need to voice that demand. We need to be that demand. We need to strive for more insight into causes of lipedema.

There’s still much work to be done in raising awareness. Don’t give up on learning about the cause(s) in this lifetime. Perhaps, as one of the members of Lipese Challenge (Facebook group) suggested, it could be a plan to take matters in our own hands and get new research topics on the table. Why not? Doctors tend to see those in need of diagnosis and at that point barely informed. Once that hurdle is taken and some additional reading and thinking is done, the vital questions start to sink in. Questions we usually only express among ourselves.

I don’t mean to be gloomy, but we are currently at risk to see research regarding causes being skipped altogether in favor of treating symptoms. And nothing but symptoms.  A course of action that happens to so many conditions out there. Finding the needle in the haystack may not be particularly marketable at the short term, but I for one would love to see it found. Because, if you ask me, prevention for generations to come still trumps surgery for damage control.
 

*Feel free to chime in and point out recent groundbreaking research towards causes, which I may have missed. Make my day!

Rock your lipedema curves

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By Tatjana van der Krabben

Valentine’s Day, the day of love and romance. Before you go over the final arrangements to give your love or loved ones a wonderful Valentine’s Day, I’ve got a big bear hug right here. For you. Yes, you! Of course you!
We’ve all been there: your body goes crazy and you don’t recognize yourself in the mirror anymore. Or worse: people rub it in how much you’ve gained and/or should lose weight. Stuff you can totally do without, to put it mildly. But where does that leave you? Is shopping still fun? Can you still be bothered to dress up? Is black your favorite color these days? Has your pretty smile left the building?

If so it does not have to be like that. Megan Trainor is singing about junk in all the right places and gets praised for it. Nicki Minaj is flaunting what we are usually trying to hide. And what do you know: the perception of what is true beauty changes every decade or so. That’s right: times they are a changin'. Curves are back! So here’s one for you:

If Kim Kardashian can be revered for her booty, so can you!

Or your other curves, for that matter. She simply markets them as beauty and shows her curves with pride. The way she presents it, it just is not open for discussion. Result: plenty of takers. Got to give her credit for that.

It all starts with a little confidence and self-love and that is what I wish for you all this Valentine’s Day. I seal it with a virtual bear hug, because we all need one sometimes.
That leaves just one more thing:

Just Be My Friend

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By Christina Routon

Hi, friend! Yes, it's good to see you too. How are you? It's been awhile, hasn't it.

Let me order my chicken salad - no croutons, please - and my unsweetened tea and we'll visit for a while. I want to hear all about your job, your friends, all the exciting things in your life. And I'm sure you want to hear about mine.

How are my legs? They're fine, thanks. Yes, I still have lipedema. Yes, I'm still wearing compression hose. Nope, no cure, but research is beginning, awareness is growing.

Am I eating organic?
Do I know what the dirty dozen list is?
Have I given up dairy?
Have I given up sugar?
Have I given up all grains, not just wheat?
Have I tried Paleo / Weight Watchers / Jenny Craig / HCG / Medifast / and so on?
Have I given up soy?
Have I given up nightshades?

Because if I do what you tell me to do (even though you're not a doctor / nutritionist / or even remotely qualified on the subject of diet, exercise and health) I can beat this thing?

Whoa, there, friend. Stop and take a breath. Yes, please stop.

I've lived with this diagnosis since 2012. I've had this disorder since I was in my early teens. Let me assure you, since you're so concerned for my health, that I've tried every diet known to man - and some I made up - over most of my adult years. The two years before my diagnosis I lived on chicken and broccoli and was at the gym six days a week. It took me two years to lose 60 pounds. That's when I knew something was wrong, and that's when I started looking for answers.

Now, friend, I'm not saying this to justify anything about my diagnosis or my life. I'm just telling you, right now, please don't go there with me again. Because what I also carried with me for most of my life is guilt. And shame. And blame. From family, doctors, strangers around me and even well-meaning friends like you.

I have lipedema, and it's a real condition and it's not going away by giving up dairy and grains and nightshades. If it were that simple I'd be cured by now.

So, friend, I appreciate your concern about my health, but what I eat or don't eat isn't up for discussion or debate.

No, I don't want your help. Not if your help is diet advice on a condition you know nothing about.

What do I want from you? I want you to be my friend. I want you to love me. I want you to support me. I want you to listen to my crazy adventures in this life and I want to hear yours. I want you to be understanding if I need to walk a bit slower or rest more often than you. I want to enjoy lunch and ooh and ahh over the baby's pictures on your phone. I want you to cry with me when life sucks and laugh with me when life is wonderful. I want to do the same with you. I want to do life together.

Just be my friend.








When art becomes about fat bias

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By Tatjana van der Krabben

On February 27, 2015 Leonard Nimoy passed away at the age of 83. My inner nerd was incredibly sad. He was an icon. No, Itake that back. He isan icon. In celebration of his life and work many people shared samples of his work, quotes and images of him. I had no idea he had been this talented and versatile. Through Facebook I learned he also was a gifted photographer and that he had a loving eye and deep respect for curvaceous women. I’m sorry I missed that before.
Author, photographer and blogger Sally Wiener Grotta posted images of his work on Facebook: artful black and white photos of nude women. Curvy, full-figured nude women, that is. Facebook took offense. This sprouted a lot of debate, since many other things do slip past the Facebook police. Ranging from celebrity nudes to live footage of torture and murder. This time Facebook had objected to art, in part inspired by classical paintings.

Sally thinks it was about the curves involved: fat bias. I agree. She did not stop there, but objected. She explained events in a blog and reposted a photo from the series of black and whites by Nimoy on Facebook. As I write this her new post has been up and untouched for 9 hours now.
Please read Sally’s blog Is Obesity the New Obscenity in which she explains the events in her own words.

I salute Nimoy for his inclusive art and Sally for not backing down. Despite having to say farewell to a gifted man and Facebook showing a less likable side, this has been a good week.

Liposuction with lipedema: Q & A with dr. Amron

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We’ve covered liposuction in the past. There are still many questions, but we're no doctors and can only speak from experience. Therefore we’re proud to announce that we found dr. Amron willing to answer our questions. The ladies at Lipese Challenge, our chatgroup on Facebook, were given the opportunity to send in their questions. Below you find dr. Amron’s expert view on the issues raised. At the bottom of the Q&A you can read more about dr. Amron and his background.

1. Does medical insurance cover liposuction?
Insurance companies in the United States are very difficult to work with, and for the most part, they’re not covering liposuction surgery for lipedema. Several patients around the country have been successful getting their surgeries covered, however, most of this comes from the patient’s persistence after surgery to seek reimbursement.

When patients are successful, it’s typically through gathering a lot of support and recommendations from numerous physicians they’ve seen – these doctors explain liposuction was medically necessary in their cases. So, it would be helpful to seek medical specialists in this regard, as well as have complete reports from the physician who performs the surgery.

Right now, the majority of the general public has never heard of this disease, and even a lot of physicians and surgeons haven’t either. That being said, insurance companies aren’t recognizing it as a unique condition that needs to be covered. Hopefully things will change once there’s greater recognition of lipedema.

I’m working to increase public awareness of lipedema in various ways, with hopes it will soon translate into insurance companies recognizing it as a disease that needs to be covered, so no one is forced to suffer due to financial constraints.

2. Describe the procedure you use for liposuction on patients with lipedema.
Curing lipedema is extremely rare, and various medical treatments have been met with limited success. The only real possible cures, which I perform in my practice, are water-assisted liposuction (WAL) and tumescent lymphatic-sparing liposuction, which many surgeons are reluctant to perform.

There are several advantages to performing tumescent lymphatic-sparing liposuction to treat lipedema patients. First, it’s much safer as an approach, and as mentioned, it’s lymphatic sparing. Second, it helps prepare the tissue by reducing the bleeding during the surgery and getting a much more pure removal of the fat. Lastly, it’s very important in terms of patient positioning, which is vital to lipo-sculpture, especially with lipedema patients.

The reasoning for many surgeons’ reluctance to treat lipedema with liposuction is likely because these are very complicated areas we’re dealing with. The calves, ankles and anterior thighs are areas most liposuction surgeons who do liposuction tend to avoid, even in non-lipedema patients, as these areas are very prone to irregularities and are technically very difficult to treat.

3. You offer a procedure that is touted as lymph sparing. What makes it lymph sparing?
One of the most crucial elements of liposuction for lipedema patients is that the surgeon approaches it in a lymphatic-sparing way, with respect and care for the patient’s deeper lymphatics.

I strongly believe doing the surgery under purely tumescent local anesthesia is the best approach for not only lipedema patients, but for all liposuction patients.

When a surgery is performed under local anesthesia, the surgeon is forced to stay only within the subcutaneous layer of fat between the skin and muscle where there are no major lymphatics.          

Damage to the lymphatic system usually occurs when the patient is under general anesthesia and the surgeon has gone into areas that are deeper than the anesthesia allows.

However, under local anesthesia, that situation is almost impossible. If the surgeon were to go outside of the field of anesthesia, which is the fat layer, the patient will absolutely be able to feel the surgeon. So, by doing it under local anesthesia, it really is lymphatic-sparing because the surgeon is forced to stay within the appropriate layers of the body, ensuring there’s no damage to a person’s lymphatics. 

4. Can liposuction be performed on patients with stage three or four lipedema, or even when they have lipo-lymphedema?
Yes, patients with stage three lipedema, stage four lipedema and even patients with lipo-lymphedema can have liposuction. However, these patients need more specific care both preoperatively and postoperatively.

It’s important to wait longer between surgeries for stage three and stage four lipedema patients, as well as for lipo-lymphedema patients. In stage one or stage two patients, I’ll perform sequential surgeries fairly close together.  But, for patients who have more advanced cases, I’ll wait about four weeks between surgeries, and sometimes possibly a bit longer. It will always vary depending on the case and the patient.

Also, with patients who have more advanced lipedema, it’s really crucial to properly bandage them with compression therapy after the surgery. Furthermore, I strongly encourage and recommend my patients have proper care for manual lymphatic drainage (MLD) by Vodder trained lymphatic specialists.

5. What are your aftercare procedures for lipedema patients who’ve had liposuction?
I’m still continuing to refine my patient-aftercare technique specifically for those with lipedema, but it all depends on the stage of condition. For stage one patients, most do completely fine with the typical compression garments for liposuction. Certainly MLD can hasten the resolution of some of the swelling, but it’s not as vital as it is for patients with more advanced stages of lipedema.

Stage two patients are usually bandaged and wrapped right after surgery, and follow up with a trained MLD therapist for compression therapy thereafter. Postoperative care is essential regarding patients recovering from the third stage of lipedema, or lipo-lymphedema, and I work very closely with Vodder trained MLD specialists.

As you move into the third stage of lipedema or lipo-lymphedema, it’s important to wait approximately four weeks between surgeries. Postoperative care at this point in the disease is extremely important, and I work very closely with Vodder trained MLD specialists.

6. Does the fat grow back after liposuction? Is there something we can do to prevent regaining fat on the legs?
With my aesthetic liposuction patients, my answer is normally a flat-out “no”, the fat will not return to the areas where liposuction is done properly. However, in lipedema patients, I do think there’s potential for the fat to return. In my experience treating lipedema with liposuction, I’ve never seen it happen to any patients of my practice. However, I’ve heard stories from other patients about fat growing back. It’s possible that the procedure was not done as completely as it should have been, and that left fat in the body to duplicate.

Ultimately, this question cannot be answered with complete certainty, but there is a possibility that lipedema patients could theoretically see fat regrow in areas if liposuction surgery is not done properly.

7. What is the long-term effect of surgery? Are there reports of lipedema patients 5-10 years after liposuction surgery?
If liposuction surgery is done properly, patients will not have any more of the diseased fat in their body, and they will continue on with normal lifestyles.

In lipedema patients there’s an aspect of hypertrophy, which means growth of new fat tissue. That said, in theory the fat could come back years later, but since I’ve known of lipedema, I’ve never seen the fat return.

Certainly, if there’s a component of lymphedema along with the swelling that comes along with lipedema, I do expect the fat component to return. For your average lipedema patient, however, the fat should not return in the long run.

I’m fairly certain there are no studies in the United States addressing the long-term benefit of liposuction for lipedema, and this is research that certainly needs to be done.

8. Should liposuction leave women with sagging skin, what are our options to fix that?
Whether it’s for lipedema or not, liposuction should always cause tightening of the skin. However, when someone has a lot of redundant loose skin, the surgeon has to be careful of how much retraction of the skin he or she is going for.

After liposuction surgery, if someone already has a lot of loose skin to begin with, there may be a need for a subsequent body lifting procedure, such as a thigh lift. It’s very important to consult with a surgeon who has vast experience in body lifting procedures, and has an understanding of the specific limitations of a lipedema and/or lipo-lymphedema patient.

9. How young can liposuction be performed for lipedema patients?
In most patients, the disproportionate storage of fat is already set in place in the middle of their teenage years typically, after they’ve started their menstrual cycles. That’s generally the youngest age I will perform liposuction on a patient, and I would apply that age range to lipedema patients, too. If lipedema has been already been diagnosed and there’s disproportion in place, quite honestly, the earlier it’s targeted, the better. This will prevent it from advancing to its later stages.


About Dr. David Amron
Dr. David Amron, M.D., is a board-certified dermatologic and cosmetic surgeon with two decades of experience and specialization in all aspects of liposuction surgery. He is medical director of the Roxbury Institute in Beverly Hills, CA.  Amron has an international reputation for excellence in complicated liposuction cases and revision liposuction surgery. His unique approach to difficult-to-treat areas, as well as lipedema, has been extensively featured in the media. His years of surgical experience, specifically with liposuction, along with his skilled artistry and refined judgment, are an essential part of the care he brings to the treatment of every lipedema patient.

Passionate about education, Amron regularly publishes articles and videos, and has contributed content to various medical textbooks and media outlets including the Wall Street Journal, Los Angeles Times and Cosmopolitan. Entertainment Tonight calls Dr. Amron “Guru of Liposuction,” and he’s been featured on programs such as Discovery Channel, the Today Show, Good Morning America, CNN, BBC, 60 minutes Australia, Extra, Inside Edition, VH1, ABC News and more.

Amron attended both UCLA and UC San Diego, where he received his bachelor’s degree. After earning a medical degree from Albert Einstein College of Medicine in New York, Amron returned to Southern California, where he continued his residency at UC San Diego and research fellowship at UCLA.

Stay in touch with Dr. Amron by following him on Twitter, Facebook and Google +

Be sure to stay educated and informed – check out Dr. Amron’s RealSelfprofile, YouTube and issuu for lipedema and liposuction blogs.

Dutch lipedema petition just won’t fly

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By Tatjana van der Krabben

In December 2014 José Boekelmans, an edema therapist who also has lipedema, started a petition to rally up support to have the costs for liposuction in case of lipedema covered by health insurance in the Netherlands. She had the support of 2 TV personalities, connected to the TV show Geld maakt gelukkig (Money can make you happy). In this show people can present their case for which they need money and what would truly make a difference in their lives. The studio audience then votes how a sum of money is to be divided between the three candidates.
José put herself out there to get funds for liposuction treatment, but also to point out how ludicrous it is that a treatment for medical purposes is not covered. Just because it was originally invented for cosmetic purposes, which is currently being held against lipedema patients who seek ways to improve mobility and reduce pain.
The co-hosts of the show shared her frustration and sense of injustice, but felt lipedema patients also needed to step up and fight harder for coverage. José proceeded by starting this petition.
 
The idea was to present the results during the elections in the Netherlands, earlier this month. Right after the show she got a fair number of signatures. Even if you don’t read Dutch: if you click on the link, the little graph on the right speaks volumes. Soon the number of people signing plummeted. By the time the elections came, there was not much to present to members of parliament, with not even 2000 signatures.

You can argue the job was a little big for just one person and not even the TV personalities managed to create more media coverage around this. But…when she asked for help nobody offered. Many were reluctant to even share the petition on social media. And so the petition didn’t fly.

Many patients can’t afford liposuction, but would like to have liposuction treatment. Because of this I would expect a little more eagerness in trying to round up signatures. If we can’t muster the courage to convince our friends and family to sign, how can we expect complete strangers to be understanding and supportive of our struggle with lipedema? Unfortunately we will need to put ourselves out there and raise awareness, if we want recognition, coverage of medical expenses and respect. We need to get the word out there. Even if that’s scary.

Maybe it’s not too late. If you’re from the Netherlands and see the potential of this petition… Well, just think about it. It could still work.

Lipedema Sister Laura Deese Reaches Out

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by Christina Routon

Laura Deese, a fellow Lipedema sister, has reached out to lipese.com through our Twitter page. She's also reached out to her local community by sharing her story with Channel 5, WNEM, near her home in Iosco County, MI. You can see the story reported by WNEM here:

WNEM TV 5 Laura Deese

It took Laura 14 years to discover she had lymphedema and she was recently diagnosed with lipedema last November.

I'm going to be contacted churches in Laura's area of Iosco County, Michigan, to see if anyone is able to help widen her door and possibly has a doctor in the congregation that would be willing to be her primary care physician. I'm also going to include some information about lipedema and lymphedema when I contact them.

If anyone is near Laura in Michigan and can offer help, you can contact the TV station at wnem@wnem.com or call them at 989-758-2044.

This is a disorder that we keep hidden for many reasons, including embarrassment, judgement, and fat bias. Laura is very brave to reach out on television and social media to ask for help, especially when the disorder reaches the later stages. Let's let her know how much we care about her.

The Point of June Awareness is Awareness

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By Maggie McCarey

Lipedema June Awareness month is  tantamount to Octobers Breast Cancer Awareness 5-mile run to raise money for research.  We and our families unite under one banner against a common enemy to raise awareness and funds for lipedema, an epidemic that affects millions of people worldwide. We spend endless hours together in committee, organizing and planning for the entire year. We network throughout the year and maintain a base of outside support: benefactors. We allocate the proceeds of our hard work to agencies that apply for grants made available from the monies we have collected. We have oversight over them. Our decisions each year evolve from  the successes and failures of past years.  Or, that is what it was meant to be: NOT the free-gifts-and-raffles after party of a game never played that it has become.  
 

   As a retired pastor, I have learned by trial and error that there are things that work and things that dont work in the life of a volunteer organization.  Things that work have the wind behind them.  They grow, like a persons lifetime of experience, into something that defines itself by the good work it accomplishes. For example, I had a shelter in Alaska for villagers who were stranded or whose family member was in the local hospital. There were many poignant moments. One snapshot: the lingering death of a young native woman on a mattress in a corner above the sanctuary while her children played amid donated clothing and her mother sewed eskimo dolls in half-light. When I left, the shelter closed because it was my idea, my implementation, my back-breaking work, and my success or failure.  
 
     On the other hand, I have been involved in things that took hold and still evolve year after year, though I and others came and left.  These good ideas became good programs with my support and continued to grow without my support.  One example, is a seven-year-old family-style dinner for an entire community that now serves upwards to 300 people every week.  It started with a few dozen poor and needy people at the table. After 6 months it still had the same couple of dozen poor and needy people.  I wanted to give the dinner up because I received a lot of backlash from the elect, and therefore, diminishing faith that the rich and middle-class would cross lines to share meals with the towns poor, but a committed volunteer said, Give it one more week.  Her faith breathed life into a beautiful idea that became flesh. She is still there, and all the people who would not cross social lines, including the poor, now cook,  serve, eat and clean up together after the community meal. 


   Activism also bears fruit. A young peace corps worker from that same community dinner town went to Koka Toga, Africa. She pledged to her village that she would build a much needed hospital for the region. She ran out of money before the hospital was finished, but she didnt run out of love. She refused to leave Koka Toga until the hospital was built. Inspired by her, my youth group sponsored a drum circle workshop followed by a lasagne dinner and free concert for their town. The huge church was filled with townspeople, all of whom were given drum sticks that they played on the backs of pews while the people of Koga Toga Africa played with them on the other side of the world.  The money to finish the hospital was raised in two hours that night. The hospital was built. Lives are now saved there every day. Thirty-fold. One lost, shy teen in my group found his voice in drumming and  became a percussionist, and  the other teens grew up seeing the power of community in action, sixty-fold. The backs of the pews are softly dented from the pounding they took; evidence of their story of sacrifice and commitment to a cause greater than their everyday purpose. One-hundred-fold. 


      Working for a cause is life-changing and life-sustaining.  It is synergistic, meaning that the whole is more than the sum of its parts, and it lives as long as it is tended to and cared for.  It produces fruit. Otherwise, it becomes a part of the tradition of people who hold onto it because they dont like change. The Christmas advent ring is one of those nostalgic traditions of the church. It is not a sacrament, though people have destroyed each other over it, many times over.  No one knows and no one cares that the advent ring began in Germany when a pastor in charge of an orphanage got tired of the children asking how many days were left before Christmas so he put candles on a wagon wheel and lit one every day. It was magical for the original orphaned children. Now rigid interpretation, number, order, and proper color  have been added to the ring. This is the absolute definition of institutionalizing irrelevance, but it holds no magic for children eagerly awaiting Christmas.  


This is sadly what  June Awareness Month is in danger of becoming. Its history and reason for being are already lost, and it is becoming a commemorative little feel-good substitute for true life-sustaining change. We have not achieved our purpose. We have not worked hard enough to unify once a year for a cause greater than out own take on lipedema. We need an ice bucket year. 

     My favorite story about June Awareness month is one I dont want to be forgotten. One year, the Lipedema Ladies in Britain rented an open air sightseeing bus. They bravely went around London with a megaphone, calling attention to lipedema. There were fewer in number than hoped for (There always is at first), but, in my mind, this memory of a handful of determined women expresses the true meaning of June Awareness. They stood publicly, a handful of committed sisters,  and identified themselves for the world to see because they wanted to make a difference in the lives of women who had not yet hears of lipedema. How much internal change had to occur within those women for them to make their bodies public object lessons, I can only imagine. These Brits are your bar, ladies.  I say: June Awareness has run its course. Let it go.But, I also ask the question: Are there women who will step forward and commit to the challenge of the following statement, Give it one more good year.

75 years of lipedema: treatment depends on your funds

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By Tatjana van der Krabben

Lipedema was discovered 75 years ago. I would like to say we’ve come a long way, but that wouldn’t be entirely true. Still few doctors doctors are informed, few doctors are informed about treatment options, few clinical trials have been conducted and the causes are unknown. Even the acknowledged conservative treatment options, like compression, manual lymphatic drainage, connective tissue massage and liposuction are not necessarily covered.
I can’t complain myself: in the Netherlands I at least get my compression and manual lymphatic drainage covered. But the liposuction came out of pocket. The gym at the local physical therapist’s practice, where I prefer to train because they at least know a little bit about lipedema and plenty about adjusted, safe workout programs is also not covered. Lipedema is ‘not on the list’. Now if I got bigger I could get it through health insurance on grounds of obesity. Wouldn’t we want to prevent that?

Then there’s the recommendation to eat organic, unprocessed, fresh foods as much as possible. Gluten-free and sugar-free. Although this hasn’t been researched, it has gained support over time and based on personal experience no argument here on the scientific evidence part. But that sort of food is more costly and often requires additional travel to farms or larger towns to even get it. That’s more cost. The same applies to the various supplements, either generally recommended or based on blood tests. Even when found through bloodwork this doesn’t necessarily imply the needed supplements are covered.

Thankfully I was able to come up with the money to exercise at the preferred place, can get a lot of organic produce, in part because of my in-laws’ vegetable patch where they never ever spray. I also got liposuction when I felt I needed it. My nest egg was gone, but at least I got to have the treatment. I benefitted. I need less of the covered care. Some sweet deal for my health insurance. I can work more and disability is not an issue for years to come - you’re welcome, government.
But what if you don’t have the sort of income to make that happen or a nest egg? What if you have been muddling through life with this unrecognized ‘thing’ that got your clothes size to go up and your energy levels to go down? You cut back on your work hours or changed jobs to match your energy levels. Your income decreased along the way.

So what did 75 years of ‘knowledge’ about lipedema get us? If you can pay for it, you can advance your health. Of course there are some low budget things you can do and once you figure out a safe workout routine you could do it from home, at the park or at a more affordable gym. Maybe you could grow some veg yourself? Let’s face it: liposuction doesn’t cure lipedema, but it sure is the fastest way to get a lot of improvement. But there’s no clever DIY alternative to liposuction. Saving up for liposuction sadly is an illusion for many. So now we see more and more attempts at crowdfunding to make liposuction possible.
Our valued fellow blogger Christina Routon is facing the same challenge. She has worked on her diet, her workout regime and works on reducing stress. Her body however, is not playing nice and is telling her she needs to take another step if she wants to see any more improvement. She has also started a crowdfunding page to work towards liposuction, but it’s hard. I see many similar requests on social media, which also implies a weird type of ‘competition’. The fact it has come to this saddens me. We need medical coverage and affordable care for lipedema. And we need it bad.

Christina is a hard worker with a creative soul and a big heart. I hope she makes it.
More information about Christina’s crowdfunding efforts:
http://www.gofundme.com/lipedema-surgery
http://creativelifeenterprises.com/fight-lipedema-t-shirt-campaign/

Lipedema film fun

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By Tatjana van der Krabben

First there was a little and then there was a lot: filmed material about lipedema. The most treasured ones are those made by women with lipedema. They made it visible to the world what it is like to have lipedema. They gave lipedema awareness wings on social media. This blog features some of these initiatives.

In 2013 far, far away from the safety of a (makeshift) studio, British ladies boldy crossed London, England in a bus, holding banners, making stops along the way to tell about lipedema. Their endeavors caught on camera:



A grand operation; a multitude of activists and (liposuction) specialists were interviewed to get a very simple yet important message across: those with lipedema didn't bring this on themselves. You can't rid yourself of it with a bit of dieting and exercise. And any lack thereof didn't bring it on. Below is not the final cut. This month you can register for a free online streaming of the film.


Last year the Dutch also felt they really needed something more visual, in their own language, to share on social media and use with presentations. Although there was an obvious language barrier, the music and the images managed to convey part of the message to viewers abroad and requests came in to do an English version. This is it, freshly released:


Short, sweet and jam-packed with information: the Australian ladies did a fabulous job with an animation:


The next video was pointed out to me recently. Some have made the effort to do a (small) film all by themselves. Sometimes to illustrate why they need funds for treatment, some to raise awareness. This video is raw, personal, but also strong and professional looking.



One more from Germany. Excuse the language issue, but it's a good vlog (video blog) about lipedema and treatment options. She explains what lipedema is, conservative treatment, the point of liposuction and argues liposuction should be covered.


The message is getting out there and is getting shared. Happy June Awareness Month!
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