I’m not fat. I have Lipedema.
That has become the rallying cry for women who have been diagnosed with lipedema.
Lipedema isn’t rare, but it is rarely diagnosed. For the tens of millions of women in the United States who have lipedema without knowing it, life is sad. They are fat and think it’s some sort of character fault in themselves.
Lipedema is a metabolic disorder of adipose tissue. Your body doesn’t know how to process fat properly, and ends up storing it in your lower body. The leading world experts, Doctors Ethel and Micheal Foldi, describe lipedema as “a bilateral, symmetrical, flabby swelling of the legs that arises from deposition of adipose tissue starting at the hips and ending at the ankles, like riding breeches.” Decoded, that means that both legs swell up the same way, starting at the hips and ending at the ankles.
Lipedema fat is different from normal fat. For one thing, it is resistant to diet and exercise, which is why lipedema women often have a longstanding frustration with diet and exercise programs.
Lipedema fat is progressive. The fat cells continue to expand and love to absorb water. They are like sponges, expanding and stretching the skin.
Lipedema is chronic. There are no magic pills to cure it. There is only treatment to control it, treatment that allows you to feel better about yourself and have a more normal life.
Lipedema often causes great emotional distress: patients feel ugly and misshapen, which strongly impairs their quality of life… these women avoid swimming in public and wear long skirts to hid their obese legs. Depression in patients with lipedema often leads to additional problems and complications.
Lipedema isn’t just about looking fat to others. Unfortunately, lipedema progresses and leads too many other serious complications, like immobility, fibrosis and stress on all the vital organs of the body. That’s what really makes it so serious, and so important to get the word out.
If you think you might have lipedema, the first question to ask your doctor is a simple one: Do you know what lipedema is?
If the answer is no, then you have some educating to do. If yes, send a prayer of thanks because you have one of the rare doctors who has already run across this, treats it seriously and knows what to do about it.
There is hope for your future. There isn’t a cure for lipedema, yet, but there are treatments that will reduce the size and shape of your legs, abdomen and arms, if they are involved. Your doctor should be able to refer you to a CLT, Certified Lymphedema Therapist, in a nearby physical therapy clinic. You’ll read more about treatment options on this website.
Reference: “Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists”; M Foldi and E Foldi, (Mosby) Urban and Fischer, 2nd Edition, 2006. Pages 418-419.