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

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...

My Journey with Myasthenia Gravis and Lung Cancer

On an ordinary day, on a routine doctor appointment, I found out I had myasthenia gravis and lung cancer in one brief...

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have...

How safe are they?

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...

Hypogammaglobulinemia

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

Do you consider yourself to have an invisible illness?

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

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...

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...

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...

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