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

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

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...

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...

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....

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...

Invisible Illness

What aspects of your rare disease are invisible to others?...

Do you allow your child with a rare disease to go on overnight school field trips?

If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....

Colonoscopy to rule out Mast Cell Activation Syndrome...

What exactly are they trying to find out from the results of Colonoscopy?...

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