My name is Mohanad Al Momani, a 52-year-old man from Jordan, and for more than four decades, I’ve been suffering in silence — caught in… Continue reading Without name?
Results for "light up for rare"
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Rare Disease Day by Muscular Dystrophy Pakistan Rare Disease Day, observed annually on 28 February, is an international awareness campaign dedicated to raising public understanding… Continue reading Muscular Dystrophy Pakistan
I am battling a rare and complex neurological condition: a “large left temporal arachnoid cyst” (97 x 55 mm) causing drug-resistant epilepsy and severe brain… Continue reading Living with a Giant Arachnoid Cyst and Drug-Resistant Epilepsy: A Plea for Global Expertise
My name is Jessa, I’m 18, and I have multiple rare diseases with unknown genetic causes. One is Ehlers-Danlos Syndrome (EDS), a connective tissue disorder… Continue reading An Interesting Case
New Daily Persistent Headache has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to… Continue reading (NDPH) Being 1 in 100,000
I was over the moon when I found out I was pregnant! I had a prior miscarriage, but luckily had a relatively normal pregnancy the… Continue reading John’s Journey
My son Emilio (my first born) was born on 6 July 2023. His little eyes didn’t open at all for the first few weeks of… Continue reading My special 1 in 50,000 baby
I’ve got a rare disease . It’s rare because after 7 years, 5 neurologists and so many tests/ scans it still hasn’t got a name,… Continue reading The 7 Year Mystery
Meet my son Anthony, he was diagnosed with Neuronal Ceroid Lipofuscinosis Type 7, also known as Batten Disease. Batten Disease is a rare, terminal genetic… Continue reading Living with Batten Disease: Anthony’s Story