Where do I start? My names Cortny and I was diagnosed with TSC before birth. Tuberous Sclerosis Complex is a rare multi-system genetic disease that causes… Continue reading My Journey through TSC (Tuberous Sclerosis Complex)
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Living with this rare disease makes life outdoors very painful. It is like being allergic to the sunlight, which causes wounds and severe pain upon… Continue reading Erythropoietic Protoporphyria
Hi. My name is Emma, my daughter Maisie has a very rare blood disorder called Pyruvate Kinase Deficienency. Maisie is the 40th person in the… Continue reading Maisie Marsh – PYRUVATE KINASE DEFICIENCY
My formal education is in Speech Language Pathology, which my husband jokingly tells me is the exact reason our fourth child was born with an… Continue reading Sonya’s Story: A Journey with CDKL5
In 1994, my son Jacob was a 1 year old child recently diagnosed with rare Infant Leukemia (ALL). After chemotherapy and total body radiation we… Continue reading Long Journey
Johann Mikhail joined our family at 7:41 PM of March 14, 2015, and he was born at 38 weeks through cesarean section. He is a… Continue reading Hope for Life: Johann’s battle with Biliary Atresia
I will probably never meet another human with my disease. Only 3 out of every 1 million people get it. But, I will meet another… Continue reading Alone…yet not alone.
HypoGal Shares Information about Disability Insurance, Sheehan’s Syndrome and Relapsing Polychondritis (R.P.) HypoGal, My Story My Story; most of my life I have never considered… Continue reading HypoGal My Story With Sheehan’s Syndrome, Relapsing Polychondritis
My son is two years old, and has seen 12 different doctors. His weekly schedule is jammed packed with 11 hours of therapy – PT,… Continue reading Curren’s Journey