Share your lymphedema story
Thank you for your interest in our “My Lymphedema Story” campaign!
Please use the submission form below to share your story.
How will my story be used?
Your story, in part or full, may be shared with members of Congress and/or used for other ongoing advocacy efforts related to the bill. With your permission we will also post your story on our blog, using only your first name.
After you have composed your story, we suggest you “copy” it. Then, after submitting it here, click on the
Contact Your Members of Congress tab, “paste” your story into the template letter, and send it to your Congressperson right now.
Who can participate?
Anyone whose life has been touched by lymphedema – patients, caregivers, friends or family members, healthcare professionals, 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 – if you would like to include pictures to accompany your story please email them to Stories@LymphedemaTreatmentAct.org. Be sure to include your complete contact information to ensure your photos are properly matched to your story. In the case of lymphedema, a picture really can be worth 1000 words!
What should I include in my story?
In general, include anything you feel might be useful to help convince someone why passage of this legislation is needed, but do try to keep it concise and limited to 500 words or less if possible.
If you are a health care professional, family member or friend, you have important stories to tell about the lymphedema patients whom you treat, or the ones whom you know and care about. Perhaps you watch them or even help them manage their lymphedema. You can tell about what courage and effort you have learned it takes for patients to manage their lymphedema.
If you are a patient, some of the things that will be useful to share might include:
• Why you have this swelling.
• How it affects both your physical health and mental outlook.
• The time it requires for treatment and maintenance.
• How it has affected those close to you.
• Have you been forced to give anything up?
• Have you had infections requiring costly hospitalizations?
• How will it save health care costs to treat your condition regularly and well?
• Have you ever been denied coverage for your treatment, or only been granted
partial coverage, and what difficulty did that cause you?
• How will the quality of your life be improved through better insurance coverage
for your garments and other compression supplies?