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

Colonoscopy to rule out Mast Cell Activation Syndrome...

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

Long time to diagnosis

I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No support never Complained again . Continuing symptoms terrible...

Mystery

No doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in blood work. I have researched for many years...

help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!

I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to wear on me, especially because I'm big on...

Road to NMOSD

In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired. I went to ER. UTI and stomach pain...

Have you ever seen your rare disease represented in the media?

How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like to see and what effect you hope it...

Experimental treatments

I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry needling which the insurance companies consider experimental even...

What’s wrong with my daughter

Hi my name is araselys. My daughter’s name is aniah. Aniah is 16, I took her to the hospital a year ago with abdominal pain. They said she had colitis...

Nags and /or citrine deficiency

Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

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