Three Year Old Dylan Has Lymphedema

Somewhere along the blog line in one of my posts, I used the phrase "famous people with lymphedema" hence/thus/so I was contacted by Heather Ferguson, a mother of a 3 year old son who was born with lymphedema (I feel your pain, Heather and Dylan) to help get more awareness and the word out about HR 4662, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.

I'm sad that celebrities who have lymphedema aren't out (of the enormous lymphedema closet) because lymphedema-y people could certainly use famous-people support and famous-people money-raising capabilities. Guess we have to rally from the ground up on this lymphedema issue. I totally consider myself ground-up.

Below is Heather's brief story:

My name is Heather Ferguson and I have a three year old little boy named Dylan who was born with primary lymphedema, which is the result of missing or impaired lymph nodes and/or lymph vessels. Millions of Americans suffer from lymphedema.  The majority of these individuals have lymphedema resulting from cancer or cancer treatment.   This secondary lymphedema occurs when lymph vessels are damaged or lymph nodes are removed. 

Like so many other lymphedema sufferers, I have had to fight our insurance company for coverage of my son’s compression garments.  In 2009 I worked with my State Representative, Tricia Cotham, and we passed a mandate requiring all insurers in North Carolina to cover lymphedema treatment beginning January 1, 2010.  (You can read more about how I achieved that at www.lymphnotes.com/story.php/id/475/)  Then late last year I sought out my Congressman, Larry Kissell.  After meeting with him and sharing my personal saga he soon decided to become the sponsor of The Lymphedema Diagnosis and Treatment Cost Saving Act of 2010, HR 4662.

Specific goals of the bill are: 

• to provide diagnosis and treatment of individuals with and at risk for lymphedema according to current medical treatment standards, including manual lymph drainage, compression bandages, garments, devices, and exercise;
• to enhance quality of lymphedema patient care by providing therapist qualification requirements; to provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from the clinical to the home setting;
• to encourage patient self-treatment plan adherence by providing necessary medical supplies for use at home; to expand patient access to qualified lymphedema therapy by extending coverage to qualified, trained lymphedema therapists who may practice under a qualified physician, physical therapist or occupational therapist; 
• to reduce total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.

As the mother of a child with lymphedema I cannot begin to express the relief I would feel knowing my son could not be denied the treatment coverage he needs to live an otherwise healthy and normal life.  If passed, this legislation will be life changing, and in some cases even life-saving, to lymphedema sufferers nation-wide, and will ensure that no (insured) American is ever denied the lymphedema treatment coverage they so desperately need and deserve. 

Please visit Lymphedema Treatment Act for more information and to learn how you can help by writing your Congressional Representative, and feel free to contact me with questions.  I also send periodic email updates about the progress of HR 4662 and I’d be delighted to add you to my contact list.

Heather Ferguson

hmffATearthlink.net  (please substitute the AT for @). 

Here is a sample letter to use to contact your congressional representative. (Many thanks to Big Leg Woman) for compiling and posting the sample along with links to finding senate and house members of congress.) 

We especially need constituents in California so please help by writing a letter to your congress person. If you contact me, I'll send you something you can cuss & paste.

Thanks again for helping us, Lymphedema-y people. And many thanks to Heather, a celebrity in her own right for fighting this fight, and her son, Dylan who hopefully isn't in for a life of frustration and suffering with lymphedema. At least when this bill passes, their suffering will lessen somewhat.