It's time to act! HR 1608 - The‪ Lymphedema‬ Treatment Act has been re-introduced to Congress!

So please use the easy system to contact your representative and ask that they co-sponsor the bill. Please share with your family and friends, you don't have to be a patient, anyone can write in on our behalf.

http://www.capwiz.com/lymphedematreatmentact/issues/alert/?alertid=63098021&PROCESS=Take+Action

Hi,

I'm starting this post as a means to revive the conversation here and to create a space where we can openly discuss lymphedema, lipedema, and bariatric surgery. If you've had surgery or if you're considering surgery, I know there are many of us out there, and we can connect here and asked questions and share experiences.

So I'll start...

Sarah, from Ohio, RNY in 2003. Diagnosed with lymphedema in December 2001, and Lipedema in 2004.

It can be considered a disability and used to request work from home. Only you would know if your employer would be open to such a request vs it causing more of an issue. I used keep a foot stool under my desk at work, wasn't always comfortable but allowed some time for leg elevation...but not above heart. Do you have a pump to use at home, or are you able to wrap yourself? That would provide. Come garments just maintain vs treat. So if you've experience more swelling you might need pump or massage and wrapping as you said you've had reduce the swelling then wearing the compression garments maintain the reduction. Any surgery can trigger LE, I think some surgeons don't like to acknowledge LE because they think it's a reflection of their skills, which it is not...LE can't happen for various reasons.

Carbs make my lymphadema much worse.  If I even eat fruit, my legs will swell more.  I can easily gain 10 lbs of fluid over night.  Have you had Lymphatic massage?  It helps a lot.  I thought I was gaining but it was just fluid.  AFTER I had my thighplasty my legs swell even more, but if I watch my carbs, it lessens.  My doctor says, I have "dependent lymphadema" since it's much improved after having my legs elevated each night.

I wear my full length compression garment 23/7, eat protein I believe in excess, my problem is elevation, I work 8 hours a day at a desk job, only get to elevate my legs while home which I try to get at least 11 hours a day.  It is not considered to be a disability issue in order to stay home more.  I am frustrated to no end.