I have emailed my congressman about supporting this and I keep updates on my Facebook time line.  I hope to raise awareness for this.  I just found out that I have this and how costly the compression garments are that need to be custom made.

In 2010 I shared My Story in support of The Lymphedema Treatment Act. The bill did not make it through the congressional process at that time and must be re-introduced. I am committed to using my newly acquired advocacy skills to help make this act a LAW.

WHY THIS LEGISLATION IS NEEDED:

• Lymphedema is a non-curable but treatable medical condition that results in an accumulation of lymph fluid swelling in parts of the body where lymphatic vessels and/or lymph nodes are damaged, nonfunctional or inadequate. Lymphedema affects an estimated 5-6 million Americans, with the majority of cases caused by cancer treatment.

• Untreated, or under-treated, lymphedema is progressive and leads to increased morbidity. Complete Decongestive Therapy (CDT) is the gold standard and only known course of treatment for lymphedema. CDT is a multi-modal treatment that is only effective when used in its entirety.

• Medicare currently covers all but the most critical component, the medically necessary compression supplies used daily in lymphedema treatment, citing they do not fit under any existing benefit category. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.

WHAT THIS LEGISLATION WILL DO:

Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.

Specific goals of the Act are:

• Provide comprehensive lymphedema treatment coverage, according to current medical treatment standards;

• Enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (including gradient compression garments, bandages, and other compression devices);

• Allow for new treatment modalities to be considered for coverage as they become available and are approved;

• Reduce the total healthcare costs associated with this disease by decreasing the incidence of complications, co-morbidities and disabilities resulting from this medical condition.

A quick one-page reference on the Lymphedema Treatment Act. To get involved visit: http://lymphedematreatmentact.org/

I had my RNY in April 07,  yet my legs remain fat as well as my arms.  I was JUST diagnosed last week with Lipedema and Lymphedema.  Thank you for post and sharing your story as will as the links to more information.  I am 51 and just now finding out about all this.  I start my leg wraps next week.  My head is spinning with all this information.  Please ladies if this discribes you search for a Doctor that will be able to diagnose this.  I saw a vascular surgeon and that is who told me what I had.  Thanks again Sarah you are my role model.

Hi Sarah,  my name is Sara, too :)  

I'm so happy for you that you not only had an amazing result but also finally got the correct diagnosis.   I was diagnosed with Stage 3 Lipedema w/ Secondary Lymphedema in August of 2011 and I'm trying to spread the word, too.   I had to travel 10 hours to see the right specialist, no local doctors had heard of it.   It's very frustrating how few in the medical field have knowledge of it, especially since it was diagnosed at Mayo Clinic in the 40's.    

I cried the day I was diagnosed because it was such a relief to learn that it wasn't my fault that my legs were so ugly.  It's a heartbreaking, challenging, painful disorder to live with.   The physical pain any time I do even a small activity is a nightmare. The mental anguish of not being able to participate in so many of life's pleasures is painful, too.  Being misdiagnosed and treated by rude medical staff isn't fun either. 

Learning more about this and finding others out in the world who live with it makes us all feel less alone, even though of course I wouldn't wish this on anyone.   If any of you have daughters it's important to realize that they don't have to be big to have this.   My daughter went with me to my appointment and she (doc) said that my daughter has the very beginning signs of it so hopefully she'll be able to prevent it from getting as bad as mine has.   That alone made me cry at the thought of it!   My daughter is being diligent about wearing compression garments already in her 20's to prevent worsening.  

I can't find any that I can wear, they are way too painful for me to put on and I bruise horribly with each attempt.    I have a generalized weakened connective tissue disorder of some kind that complicates it for me (causing a long list of other issues and contributes to the worsening Lipedema).  I don't know how anyone could get those stockings on if they have even half the pain I do, it is just impossible....and I"m pretty tough with pain because I have MS and other issues as well.  It's frustrating that they don't make them bigger than they do, I've tried to get them at max size which is way bigger than the charts say I should get and I still can't get them on.    I've had to start wrapping my entire legs in ace bandages (so hard) if I need to go anywhere.  

I'm so scared that this is as good as it will get but I can't give up hope.   I am hoping to get better and get back to work as a nurse so I can spread the word in my work, too.  Hopefully more education to all will bring more hope and better treatments in the future.   Thank you for your posts, I know they are old and not sure if you're still around but I hope you're doing well.  

Hugs to all going through this! 

I developed a DVT 18 months after WLS so blood clot was not a concern for WLS but for my hernia repair and panni removal I had an IVC filter placed, but just a temporary one as they were concerned if a permanent one might later cause complications with the lymphedema. I also had to be on Lovenox injections as precautionary measure afterwards.