Share your lymphedema story
Please use the submission form below. Thank you
for participating in our “My Lymphedema Story” campaign!
How will my story be used?
Your story, in part or full, may be shared with your members of Congress, the Centers for Medicare and Medicaid Services (CMS) and/or used for other ongoing advocacy efforts related to implementation of the Lymphedema Treatment Act, which was passed into law on December 23, 2022. Your contact information will be included to show that you are a constituent. With your permission we will also post your story on our blog, using only your first name.
Who can participate?
Anyone whose life has been touched by lymphedema – patients, caregivers, friends or family members, healthcare professionals, compression garment fitters and providers, etc.
Can I read other people’s stories?
Yes – a sampling of submitted stories will be periodically posted on our blog.
Can I send pictures?
Yes. After submitting your story below you will be redirected to a confirmation page that will include an email address for sending your photo(s). In the case of lymphedema, a picture really can be worth 1000 words!
What should I include in my story?
In general, it’s best to keep your story concise and limited to 500 words or less if possible.
If you are not a patient, you still have an important story to tell about the lymphedema patients whom you treat or care about. Share how insurance coverage for their compression garments and supplies would help them to manage their lymphedema.
If you are a patient, some of the things that would be useful to include are:
• State why you have this swelling (very brief, no more than a few sentences).
• What compression supplies do you need to manage your swelling and why are they essential?
• Are you no longer able to work or perform activities of daily living, or struggle to do so?
• Have you had infections or other complications requiring costly hospitalizations?
• Have you ever been denied coverage for compression supplies and what difficulty did that cause you?
• How will your health and quality of your life be improved through better insurance coverage for your compression garments and supplies?
