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

Patient with strange symptoms

I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...

Ehlers Danlos and Epydermilosis Bulosis

I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...

What do you guys think this is

I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...

Living With Adult-onset Still's Disease?

Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...

Numbness in fingertips, sensations in feet and head all depends on what I eat.

Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant sensations in my feet, I get sores...

Doctor just said I have some random virus but am wondering if it is true or not.

So i went to the doctor today and they said I just have some random virus but do not know if it is true. symptoms: Body aches, Fever 101-102.3 it...

what are some tips for managing rar disease?

Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...

undiagnosed with normal blood work

These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...

SMS

Does anyone on here have Smith-Magenis syndrome or have family members with it?...

Sweet Syndrome

Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...

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