Lymphedema “Share Your Story” Campaign

What will my letter be used for?

Your letter will be shared with members of Congress and other groups which we are seeking support from for HR 4662.    

How to participate

Send to:  Stories(AT)LymphedemaTreatmentAct.org (replace the (AT) with the AT sign @)

Subject Line:  My Lymphedema Story

Format:  Please place the following at the top of your letter:

•                 Name
•                 Complete Address
•                 Email Address

Length:  That is up to you but we suggest that you try to not exceed one typed page.

Suggested Content:

               

·         Is your lymphedema primary or secondary?

·         What is the cause, if known? 

·         If the result of cancer please specify what kind of cancer.

·         The age of onset.

·         The length of time before you were diagnosed.

·         The length of time until you were able to begin treatment.

·         Have you ever had a problem accessing treatment or finding a qualified doctor or therapist?

·         Has your insurance ever denied coverage for any portion of your treatment?

·         Have you ever had to go without treatment due to lack of insurance coverage?

·         If yes, what were the consequences?

·         How has lymphedema impacted your life?

·         What would this legislation mean to you is passed and how would it improve your quality of life?

(an update from Heather Ferguson who's 3 year old son was born with lymphedema)