There was a time when most children diagnosed with a rare condition did not live until adulthood. But now, with advances in medicine, many individuals are living long, full lives despite their diagnosis. Why then do advocacy efforts surrounding rare diseases still largely center around children? While the reason for this discrepancy is unclear, there is a simple way to begin making improvements. It starts with awareness surrounding the adult patient story.
Author Rebekah Palmer has made it her mission to aid in this publicity. She runs a public blog for rare diseases and is asking for adult patients (age 20 and up) to share their stories. There is also potential for these stories to be published in a book Palmer is working on to “lift the voices of adults living with rare disease.”
She would love stories from those born with their condition or diagnosed later in life. Palmer reiterates that every story is an essential part of the conversation.
“Each adult will have similarities due to same health diagnosis, but each life will expose a different part of living rare dependent on the race, nationality, ethnicity, gender, sexuality, class, religion, and ability the person reveals in their experience of rare disease.”
She encourages submissions surrounding a wide variety of topics including:
- Realization of diagnosis
- Transition from pediatrics: Reception from the medical community & rare disease community
- Medical treatment/devices/surgery past and presently, as well as future prognosis
- Education (informal or formal)
- Family Life: Faith, identity, culture
- Letter to parents/siblings/peers/society
Anyone who would like to share their story can submit their piece to Palmer at firstname.lastname@example.org. Your submission can be written, shared by video, or shared over the phone. The mode doesn’t matter, your story does.
To read Palmer’s blog and for more information on her project you can click here.