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

Active 5 days ago

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 a high red cell count, it's at the...

I’ve had eye muscle weakness and droopy eyelids from Myasthenia Gravis , Has anyone else experienced vision problems due to a rare disease?

I’ve experienced vision issues linked to a rare condition — specifically eye muscle weakness and droopy eyelids, which were early signs of Myasthenia Gravis in my case. It started with...

Anyone experience this and how do we get help??

My son and I started having symptoms a year and a half ago, started after a camping trip and we had a lump on different parts of the body ...

Please help my wife, she has a disease that is difficult to diagnose

Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Goosebumps with most emotions/passion, sneezing, yawning..

Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few months it’s escalated, to goosebumps all over my...

Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms

Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he was just 2 months old. These symptoms include...

Undiagnosed with neurological symptoms and multiple misdiagnoses

Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...

Doctors can not figure out wife's medical issue

After over a year of testing they still can not figure out what is wrong. My wife had had roughly 8 cat scans, erg, colonoscopy, gastric emptying, mri, biopsys and...

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