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Joachim Zuther, Lymphedema Specialist. Read more
Lohmann Rauscher
MediUSA

Tactile Medical

Help to Educate Congress about Lymphedema

 

Dear Readers:

I received a message from Heather Ferguson, the young mother from North Carolina who was instrumental in securing the coverage for treatment of lymphedema in North Carolina. Heather was also instrumental in convincing Congressman Larry Kissell of North Carolina to sponsor the Lymphedema Diagnosis and Treatment Cost Savings Act, HR 2499 (formerly HR 4662). This bill, if passed, would improve coverage for the diagnosis and treatment of lymphedema.

Here is Heather’s message – please support this important cause:

On November 2-4, 2011 lymphedema advocates from around the country will be traveling to Washington DC to raise support for HR 2499, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2011!  As part of this trip, organized by the Lymphedema Advocacy Group, participants will conduct a Staff Briefing to educate Congress about lymphedema and the importance of this bill.

To ensure good turnout at the Staff Briefing we need your help with a very quick and easy but important task.  Please go to www.LymphedemaTreatmentAct.org and visit the “Contact your Representative in the House” and “Contact each of your Senators” pages.

The template letter has been temporarily changed to an invitation for Congressional staff to attend the HR 2499 Staff Briefing taking place on Thursday, Nov 3rd.

Please complete your name and address to send this invitation to your Representative and Senators’ offices.

This will only take a couple moments of your time so please do your part to support passage of this bill!  For questions or additional information please contact Heather Ferguson at info@LymphedemaTreatmentAct.org.

Do you need more information on other topics on lymphedema? Use the “Select Category” window on the right of this page and select the topic you are interested in. Once selected, a new page will load with a number of articles related to the topic you chose. Click on any headline of the articles and the entire article will load up for you to read.

Join Lymphedema Guru, a Facebook page solely dedicated to inform about all things related to lymphedema – news, support groups, treatment centers, and much more

7 comments to Help to Educate Congress about Lymphedema

  • t.k.thanthoni

    I am a lymphedema patient from 2004, cancer related, entire right lower limb affected. But I am managing it with three ‘e’ s, i.e. elastic (using stockinet), elavation (keeping the leg in an elevated position during sleep) and exercise (walking). I am now 72 and am a happy globe trotter. I am willing to furnish any details about this to anybody to help them to mitigate the problem

  • Mona Dunlap

    I’ve had lymphedema since 2001 and went undiagnosed until 2003. I have it in both legs. I believe I got it from an emergency surgery that I had on my gallbladder. The theory is that a cluster of lymphnodes was severed. I have battled with it for 10 years now and still don’t have it under control. There is a Lymphedema Network in the state of California that I’ve contacted because I’m in need of inpatient therapy. I was told that there is only one place in Pa that will do inpatient and when I called there I was told it is now outpatient and they don’t take my insurance. I recieve SSI for this condition and yet a facility that handles long term as well as short term rehabillation doesn’t accept PA Access or Medicaid. I’ve had Home Healthcare several times that claim they know how to do the “wraps” and when they get here they don’t have a clue. I had one nurse tell me that she saw a picture of it so she has a general idea. I’m at my wits end with trying to deal with this. It’s been a long battle with no end in sight. I have a set of electronic leg bags that are not effective at all and was told that there are better ones but my insurance doesn’t cover them. I’m sure you can understand my frustration. I would have to travel anywhere from 40-80 miles one way to see an occupational therapist that knows what they are doing. I could go on forever but I won’t. Any suggestions on how to change things for those of us that seem to fall through all the cracks?

    • Joachim Zuther

      Dear Mona: We can only suggest to seek the help of a properly trained lymphedema therapist. On the top of this page is a menu bar, please click on “Find a Therapist” to locate a trained lymphedema therapist in your area.

  • Gayle

    Mona,
    I have had the same problems as you. I have been working on this for 13 years. I wish that you could write to me, and maybe we could share with each other ideas of what to do. I would like to know where you live and your insurance. I live in Modesto. Please write to me at gbrown538@aol.com.

  • My has been cancer free for over nine years, and suffers from Lymphedema of the right arm. It is good to know that HR2499 The Lymphedema Diagnosis and Treatment Cost Savings Act of 2011, is being presented to Congress this week. We need your support contact your family and friends to send a message to Congress to work to pass this Bill.

  • Shirley

    I am happy to see the lymphedema diagnosis and treatment cost savings act being introduced to Congress.
    I am also delighted that I found a doctor who specializes in lymphdema and I will see her next week for the 1st time. I am just thankful that she is on my Medicare HMO list….

  • Kim Ware

    Hello everyone:
    I have suffered with lymphdema for the past 22 years. I was 25 when I first noticed swelling in my legs and ankles. This condition did not have a name or diagnosis at that time and the doctor’s I went to for treatment were not educated about lymphedema. I only knew about this condition because other women in my family had the same condition. Although over the years my condition has gotten progressively worse, I am more knowledgeable about lymphdema and treatment options. I now receive treatment from a lymphedema physical therapist in adttion to wearing compression hose,exercising and controlling my diet. I am seeking a more effective solution and would like to have the WAL procedure performed.
    Thank you