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

My rare disease caused my kidney failure

I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...

unexplained throat and neck pain for 7 weeks now.

hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have throat pain. it wasnt like a sore throat...

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...

Dont know

My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...

Medical Mystery - Can anybody help?

My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...

I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis.

Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...

VEXAS - In Honor of Max Gyllenskog Part 1

Here's part 1 of a series I'm working on to try to help other people understand this disease as I'm learning it, in an easier way. I hope you will...

VEXAS - In Honor of Max Gyllenskog Intro

VEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled. It started with a blood clot in his...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...

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