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

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?...

Pola1 gene variation

Hello, I would like to connect with a family who has a child with POLA 1 gene variation, specifically Van Esch-O'Driscoll Syndrome, my son has this variation....

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...

Bones in head constantly keep feeling like they swelling.

For past 12 years I have had the sensation in my head that my skull is swelling.I also have a extremely itchy scalp and my face is constantly burning with...

METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"

METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in which the iron in the heme group is...

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...

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...

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