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

People do not understand that fatigue is different from exhaustion.

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...

Featured

What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?

Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...

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...

I wish others knew that...

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

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....

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