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

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

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What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

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I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls)

(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability to open my fingers; it feels as though...

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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...

my life with Polymyositis

About 7 years ago (I was 77 then) I began noticing body weakness, first, gentle, then more acute. I needed a cushion or two to rise from a chair, needed...

Unknown Illness - Side pain & Snycope

For the past few years I have seen multiple specialists and had many tests. Physical - Female, white, 32yo, 200 lbs. Historical symptoms: Ongoing: Low blood pressure, bradycardia (normal resting...

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...

New here today, and looking for folks dealing with MDS.

Been on different prostate cancer sites with interesting info, but can't find much on myelodysplastic syndromes (MDS) anywhere. Know there is only 10-14K cases a year. Doesn't seem like there...

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...

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...

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