Forums

Read conversations, start a discussion, and connect with others about rare diseases.

Active today

People do not understand that fatigue is different from exhaustion.

Active today

UNDIAGNOSED RELAPSING NEUROMUSCULAR / NEUROLOGICAL DISORDER – SEEKING ADDITIONAL OPINIONS

Patient • Female • Age 45 • United Kingdom Overview The patient developed a slowly progressive neurological illness approximately three years ago...

Active today

Hypogammaglobulinemia

This disease has caused me to be allergic to many medications and some can kill me. Looking for oxidative help so that...

Active today

Do you consider yourself to have an invisible illness?

What aspects of your rare disease are invisible to others? Share in the comments below....

Active today

Have you ever seen your rare disease represented in the media?

How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like...

Active 4 days ago

Undiagnosed Long Term Disease HELP!

Hi all Brief rundown, I am a 23-yr old male and have been chronically ill now for over 24 months, bedridden, extreme...

Experience with normal pressure juvenile glaucoma?

I have low/normal pressure juvenile onset open angle glaucoma that was ~11 years late diagnosed. It’s medication resistant and my next option...

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but...

Anyone have this? It’s really distressing.

I’m wondering if anyone else has experienced something similar, especially at night or around sleep. I’ve been having episodes involving a strong...

Possible Cervical Myelopathy

7 months ago I suffered an acute injury causing a herniation at L5-S1 giving me S1 Nerve compression. The neurologists and orthopedics...

Categories

Select a category to find topics that interest you.