Monday, May 18, 2015

Looking back on nearly a year since my Lipedema & Lymphedema diagnoses

Almost a year ago, I was diagnosed with Lipedema and Lymphedema. There are no medicines to take, no cures to be had. You do not have to be overweight to have this, and they aren't sure what causes it (sometimes even children have it, sadly). That's why it's labeled 'unclear etiology' by the medical journal article linked below, which was published in the Journal of the American Board of Family Medicine (JABFM). 

"Approach to Leg Edema of Unclear Etiology"
http://www.jabfm.org/content/19/2/148.full.pdf+html

The U.S. is far behind Europe in diagnosing and treating these conditions, but raising awareness can help those who may have it and not know it. I'm doing my part. Lipedema often runs in families and is thought to have a possible genetic connection. Hormones are also involved, since only a handful of males have EVER been diagnosed with it.

In severe cases, you lose mobility or, sometimes, have your leg(s) amputated. Thankfully, I was diagnosed and began MLD (Manual Lymph Drainage) therapy and started wearing compression stockings. My legs, below the knees, are affected. But sometimes it spreads. I'm at Stage Two, and DO NOT want to end up at Stages 3 or 4. 

So far I'm doing okay with managing it. If you saw me out in public, you'd never know I have this condition, but I do. There has been marked improvement, but I can never NOT keep up the maintenance. It will not go away. It can only be managed. Some day I hope researchers and doctors pinpoint the cause(s) and find a cure. Most people haven't heard of Lipedema OR Lymphedema. I sure hadn't prior to 2014.

Ladies, it doesn't matter how young or old you are, and it doesn't matter if you're a size 2 or a size 20+ -- you should become familiar with these diseases. The quality of your life depends on it.