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We are a real family of beautiful, compassionate, hard-working women-- sisters, daughters, and granddaughters- who have battled against our one "shared imperfection" separately and alone for decades. We have over-exercised. We have sized each other up at reunions. We have competed against each other by starvation dieting. We have grieved for our heavy daughters and nieces, and blamed ourselves for their cruel fate. We have felt secretly relieved that we are not the fattest person in a family picture. What our family hasn't done is communicate with each other about the personal scars and deep wounds we received struggling alone with fat issues.
Now "it" has a name, and at last we have a common enemy. Like any good enemy, it has drawn our family closer together. The medical community calls lipedema "a rare and incurable disease." We call it one of the best kept secrets in America. We are a united family and ready to stand against this disease and the misogynistic barriers that keep women enslaved in physical, social, and emotional pain by bigotry and ignorance. You are not alone. YANA.
2010 UPDATE
I and many other lip sisters across the country have contacted actors, new shows, medical shows, columnist and senators trying to get at least enough public awareness to have lipedema studied in medical schools. We have been largely unsuccessful. It has been two years since my diagnosis. At end stage, I find myself deteriorating rapidly and I wonder if lipedema is more life-threatening than we thought. We are on our own with this disease.
I went to an orthopedic last year. I take a nurse practitioner with me when I see a specialist to answer questions about lipedema. Otherwise, without exception, new to me doctors want to talk about my weight when they see my legs. I take pictures of lipedema with me, also. The doctor blanched when he saw them. He said to me "You are bone on bone in both knees but you must never have surgery. The risk of amputation is very high." He sat back then and put his hand over his eyes. "I didn't know it had a name." He is a teaching professor at a major med school. And then like every other medical professional he sent me on my way without the slightest bit of hope.
And why am I bone on bone? Because I am a raging perfectionist who spent my entire life running up hills, walking miles, and doing stair crunches while starving myself in order to be "acceptable" unaware that I was susceptible to debilitating arthritis. Now when I hear Oprah, Michelle Obama, and Dr Phil give the medical professionals advise to the obese, I cringed. If 6 million women have a genetic disease, how many children in America are also affected. These poor women are still blaming themselves for their illness, not knowing they can never be healed.
How are we going to get the news out ladies? You are not alone. YANA, Maggie
2011 UPDATE
Great News. My daughter and I have made amazing advances in our research (nope, not credentialed except that we have lipedema and the medical community has signed off on us as incurable--kind alike "the fat leading the fat" idiom). We now have a protocol that has made both of us two sizes smaller in four months, eliminated our intense pain, eats up adipose, making our legs soft, and eliminates red hot inflammation from our knees. (I now feel my kneecaps!) All while eating sandwiches, pizza, candy, delicious condiments, and wonderful deserts. I have created an ankle sling that acts like a circulation pump to eliminate secondary lymphedemia in stage one or to greatly decrease it in stage two. As soon as you put it on, you take a deep breath and feel more oxygen In connection with this ankle sling, I have created a way for lipedema women to get the correct compression (without pain by definition) and to wrap themselves. (I feel like an info-mercial--all for how much??????NO COST TO YOU, SISTAHS). In the first few months, this website received 1500 hits a month. January, 2011 it hit over 12,000. In August, the site received 39,000 hits. We have our lipedema facebook support group in full swing...Lipedema Lite.. and we are thrilled to learn from your experiences, too. You are not alone. YANA, Maggie
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