There's a good chance you've never heard of the disease I have - lipedema - but it's a very serious, inherited, progressive disease that affects an estimated 11 to 13 million women in the United States alone. Most of the time, the disease is misdiagnosed as lymphedema or obesity, so most of them, and often their doctors, don't know they have it.
What is lipedema? Have you ever been sitting at a table with a woman who looked like a size 8 from the waist up, but when she stood up, she looked like a size 16 from the waist down ... as if she had two different bodies? She probably had early to mid-stage lipedema.
Typically, just after puberty, fat cells between the waist and a point just above the ankles, on both sides, start to swell independently. You can’t gain or lose the swollen fat cells based on what you eat or how much you exercise; in one Boston case, for example, a woman who was anorexic starved away her “normal” fat but retained her lipedema fat.
The tissue is very painful – the disease is also known as “painful fat syndrome.” Over time, the swelling continues, often expands to the torso and arms, and as a result, women develop secondary lymphedema, other circulatory problems, and fibrosis, which puts them at high risk for life-threatening infections. The lymphedema part of the disease can be managed but not cured, and it also tends to get worse over time.
I wasn't diagnosed until 2002, when there were no treatments available. Back then, in an earlier stage of the disease, I could still walk all over a city, work full time, and I traveled at least twice a month for my business.
Today, the disease has progressed so much that I’ve developed bone-on-bone arthritis in both knees, and have trouble walking from one room to another; outside, I use a wheelchair or scooter for anything more than a few hundred feet. I can work only part-time, from home (hooray for the Internet). I have now reached Stage 4, and need personal care assistants. In the picture above, with my hand on my knee, you get a sense of how much my legs have swollen.
In my family, everyone lives to a ripe old age, and this is not how I want to spend my life. Until recently, I was resigned to the idea that there was nothing anyone could do to help.
The good news is that medicine advances. There is now a more advanced liposuction technique, pioneered in Germany, that can be used on women like me without causing even more damage (especially to the lymphatics). A recent study showed that eight years out, the lipedema had not returned, and patients had significantly less or even no pain and much more mobility, with fewer and less severe secondary effects, which means they are able to walk, exercise, work, and generally lead healthier and more productive lives.
A handful of US surgeons now have been trained in the technique, with significant positive experience. My operations will be the first done in New England, starting on November 20 (!), and should open doors for many other women. The process will require an estimated 5 to 7 surgeries over 2 to 3 years, and while my insurance will cover the surgeries and some of the recovery, there will be very significant out-of-pocket costs. The prospect of returning to something like a normal life means all of this will be worth it. And not only for me.
While there have been some surgeries done on women in my stage of the disease, U.S. surgeons will be able to learn from a successful treatment with my combination of late-stage lipedema and secondary lymphedema. Also, once the lipedema surgery is complete, I will be able to get knee replacements, which means I'll be able to walk normally for the first time in many, many years..
The millions of women who have this disease often live without understanding it, without the support of knowledgeable doctors, and without treatment options. I hope my experience not only will restore my life but improve theirs as well.
Thank you for reading this far, and for considering this request. Please let me know if you would like more information.