A UK patient perspective on Mal de Debarquement Syndrome. Although it is coded as an inner ear condition, Mal de Debarquement Syndrome (MdDS) is now… Continue reading A UK patient perspective on Mal de Debarquement Syndrome
Results for "light up for rare"
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My name is Molly, and I’m almost 16 years old. I am from New York State and I am living with multiple chronic and rare… Continue reading Chronically Molly
I have Bile Acid Malabsorption – a rare disease that affects the digestive tract, predominantly the intestines. My symptoms started at 11 years old, I… Continue reading 19 years later I got my diagnosis
Well first off TM is so rare even the Rare disease scroll doesn’t have it on there!!! She doesn’t have ADEM but it was the closest.… Continue reading TRANSVERSE MYELITIS
Well first off TM is so rare even the Rare disease scroll doesn’t have it on there!!! She doesn’t have ADEM but it was the closest.… Continue reading TRANSVERSE MYELITIS
Rare disease day is February 29. It’s a “rare” day dedicated to bringing information about rare diseases to light. I don’t post about it a… Continue reading I’m A Zebra
I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in February 2018 at age 27, after years of suffering from headaches, dizziness, fatigue, confusion/ brain fog, nausea, and… Continue reading The IIH diagnosis that changed my life.
My name is Venkata.I work for PPD. My 8 years daughter has Leber congenital amaurosis (LCA) from birth .Its a rare disease and 1 in 50000. My daughter Also… Continue reading LCA
Olivia Mae is our spunky, soon to be 3 year old, who is living her best life. In May of 2019, Olivia was diagnosed with a… Continue reading Our Overcomer