Archive for June 7th, 2011
Posted on June 7, 2011 - by Nurse Virginia
“I’ve seen a lot of people like you,” the doctor says to Joyce “You have a chocolate cake hidden in your hamper and you eat candy bars all day long.” Joyce is speechless, candy bars? She can’t remember the last time she ate a candy bar. Joyce knows she won’t be continuing with this doctor, yet she goes through with the blood tests he orders, just to make a point.
Joyce knows that her LDL and HDL numbers will bear out how she eats; those numbers have validated her in the past with other physicians. But no, this physician like so many others thinks her Lipedema condition is due to over eating. In fact the way he never said “Lipedema” even after she had said the word, reinforced to her he had never heard of it.
No, Joyce long ago realized she and her sister Connie were on their own. Oh wait, on their own, but with the help of a very knowledgeable and powerful friend, the internet. Wow, the internet! Access to all the latest information on a little known, little understood condition that also carried with it little sympathy.
From the internet Joyce learned that:
- Europe is way ahead of the recognition and understanding of Lipedema (called Lipodema there) than the United States.
- There actually are clinics in Germany working on this disorder.
- There are estimated 6 million sufferers in the US alone.
- For those in the US who do recognize it as an inherited disease – they have deemed it as “rare” (6 million doesn’t sound rare) and “incurable.”
- 90% of those diagnosed also have hormone problems
- Due to the pressure of the fatty tissue on lymph flow, many sufferers end up with Lymphedema as well.
- Obesity doesn’t cause Lipedema.
It looks to Joyce and Connie like they will have to be their own guinea pigs and pursue finding those like minded women, with those column like legs.
Virginia Garberding, R.N.
Author: Please Get To Know Me – Aging with Dignity and Relevance