Lipedema is NOT obesity

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 This is unpublished at this point, but you can find a summary in English here.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 Meaning: BMI doesn't add up for lipedema.* Again unpublished at this point, but you can find some information on this research in English here.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.

Lipedema captured on film

By Tatjana van der Krabben

On June 14, 2014 a Dutch Facebook group launched a short info film on lipedema at the NLNet conference. It’s in Dutch*, which may very well be gibberish to you, but I want to share with you the story of the making of and the message this group and myself as a member of this group would like to share.

In Augustus 2013 a member of the Lipedema Friends and Info Page started dreaming out loud: what if we could do an information film on lipedema in Dutch, something catchy, to raise awareness. A quick search taught us nothing like that had been made. Yet. And that’s when we got ambitious. It had to be catchy, not too long, provide useful information, have a feel good factor, a message, be suitable to incorporate into a lecture for a varied audience and professionally made, please and thank you. Why this long wish list? We could only – hope to – raise enough budget to do one film and the need for material to educate the public, (new) patients and medical professionals was there. It simply had to be versatile and of sufficient quality to take it places.

After that, like pieces of a jigsaw puzzle, everything started falling into place. Someone knew a professional filmmaker who was willing to help and shared our vision. Someone arranged at work we could use a space and facilities there to shoot the film. One of the members of the Facebook page who offered to help is also a board member with the foundation NLNet for lipedema and lymphedema. One thing led to another and NLNet offered us time at their conference to do the launch there. We formed a work group of four and raised the needed funds through crowd funding among the members of the Facebook page. All members were welcome to pitch in ideas for the film, after which I wrote the script. Then we asked members to participate. We got all stages and different ages represented: sixteen gorgeous ladies. We also made a conscious decision to show our legs anonymously and in motion. You know that distinct look of the back of your knee in advanced cases with that extra padding? You don’t see that from the front and moving images are also more attractive to watch. The film therefore shows the legs from all sides.

Every meeting we came to the same conclusion: we wanted motion, movement, energy! Movement became the theme. We need to move forward and we literally want to keep moving. In its wake came the second point we wanted to make: the value of early diagnosis. Catch it early and you preserve (most of) your mobility, energy and your true figure. Although the “spoon scene” explains how daily activities can drain you, we hoped to convey joy as well. Lipedema may interfere at times, but we certainly have a zest for life.

So far so good, but the only pro in da house on D-Day was the filmmaker. Sixteen women, knowing very well they would also be showing their legs later on and not so anonymously in front of this man. Not to mention eventually seeing it back on a BIG screen. But he worked miracles and approached the topic with great integrity and a little humor. Sixteen women, some already knew each other, others we only knew from Facebook until then, but at the end of the day we had bonded. I think it shows in the footage. A little secret from behind the scenes: at some point our chatting was so loud, we disrupted the filming of a scene in the other room. In the end we all sat in the same room to watch the scene being filmed to make sure we kept quiet for a bit!

Last Saturday with the launch it all came together. The group was almost complete, the filmmaker was present and we all got to watch it together. Afterwards we were asked to come on the stage and Henry Scheer, the filmmaker, gave a heartwarming speech and offered on the spot to also help us with an English version. So Henry, we got witnesses! Just kidding, he’s been a great support throughout. This, and the fact several therapists approached me immediately after to ask if they could use the film in future lectures, showed it was a launch in the true sense. And yes, they can use it. This is what the film is meant to do.
We started with a small snowball and now it’s picking up speed. Carry on little snowball. May you travel far and kick butt.

*English version of the film to follow.

Lipedema and me

By Sylvie Giroux

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

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