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We are a real family of physically beautiful, compassionate, hard-working women--four 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. That changed last summer when we were all diagnosed with lipedema.
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 now and ready to fight.
We are committed to making women aware that a disease may cause their obesity. No matter what they do, what diet they follow, what surgery they undergo, they will not lose the layers, drapes, and bulges of fat that possess their bodies. Like us, if you are a person of any size who eats less than most of your family and friends, we know you are telling the truth. Like us, we know you have been many shapes and sizes throughout your lifetime. Like us, you have been made fun of, shamed, lectured, pitied and called names. Like us, you have no idea what size you really are. Like us, your doctors have blamed you for this disease.
With you, we are a sisterhood six to twelve million women strong (as much as 11 percent of the female population in this country) joined by an inherited protein. We can change our fate together.
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." 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. In two years, I have located one lipedema specialist in America. She is in San Diego. Contact me if you want her number. She does phone consults.
I have discovered an herbal protocol that seems to help me. I do not want to give medical advise to people online, but I will share what I take if you e-mail me.
How are we going to get the new out ladies? Blessings. You are not alone. Blessings,
Maggie
THE FAMILY
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