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What is the most annoying unsolicited advice you've heard?

What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...

Active yesterday

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 yesterday

People do not understand that fatigue is different from exhaustion.

Active yesterday

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

Active 3 days ago

Hypogammaglobulinemia

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

Active 3 days ago

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 3 days ago

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 6 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...

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