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

Active today

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...

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 today

People do not understand that fatigue is different from exhaustion.

Active yesterday

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...

Active 4 days ago

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...

Active 8 days ago

Feeling alone

I have Microscopic polyangiitis, a form of vasculitis that closes up my small blood vessels. Mostly in my kidneys, lungs and intestines...

15 years no closer to answer's

Hi everyone, I'm just winging it and reaching out to the Internet today to ask if anyone knows anyone or any conditions...

That I can control my symptoms if I make an effort

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

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