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

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...

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...

Dermatomyositis

I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID...

My disease

I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...

What life lessons or advice is important to pass on to children and young adults living with a rare disease?

What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your family?...

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