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

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...

Does anyone here have Mast Cell Activation Syndrome?

Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I can eat it, or if it doesn't cause...

What do you guys think this is

I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

Adrenal hormones

Hi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system. Everything is fine. The problem is that in...

Life with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis

Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis (Axial for me ). Tbh, living with...

Healthcare navigator specializing in rare diseases

I’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...

SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"

Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially impact physical health and spiritual or psychological or...

Patient with strange symptoms

I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...

Antibiotics experience: Azithromycyn, Ethambutol and Refampin

A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success. Do you or someone you know...

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