this post was submitted on 11 Oct 2024
33 points (100.0% liked)

Disability and Accessibility

886 readers
1 users here now

All things disability and accessibility related, and advocacy for making those things better.

See also this community's sister subs Feminism, LGBTQ+, Neurodivergence, and POC.


This community's icon was made by Aaron Schneider, under the CC-BY-NC-SA 4.0 license.

founded 1 year ago
MODERATORS
 

For people with rare diseases—estimated to be between 263 and 446 million people worldwide—finding the right doctors and treatments can feel like a Herculean feat, a reality Alexandria knew all too well. “There is no long-term cure,” she wrote. “I’m very very very sick, things are progressing fast. I’m wheelchair or bed bound most of the time. I had 16 seizures yesterday and over 30 stiff person attacks.”

In the United States, rare-disease patients often go into significant medical debt to pursue treatment, even traveling to different states to see specialists with months-long waiting lists. In addition to the monetary burden, those seeking treatment for rare diseases also face a mental, emotional, and spiritual toll.

In the face of these obstacles, rare-disease patients like Durán must relentlessly call insurance companies and medical offices, create and share resources, and form care networks to lift some of the burden—and help keep them alive.

top 1 comments
sorted by: hot top controversial new old
[–] Lexam@lemmy.ca 9 points 3 weeks ago

I will die on this hill. I fucking hate breast cancer awareness. We are all aware of breast cancer. No one is aware of IGA Nephropathy.