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

Active 4 days ago

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought it was a slight stuff. Over time some...

Active 4 days ago

1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...

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...

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...

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...

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...

What is Retinitis Pigmentosa, and how does it affect vision over time?

Retinitis Pigmentosa (RP) is a rare, inherited eye disease that affects the retina, the light-sensitive tissue at the back of the eye. It causes the gradual breakdown and loss of...

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

I want to know the statistics regarding how many people there are in the world diagnosed with both Neuromyelitis Optica and Myasthenia. Gravis....

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