- CASE FILE
Burning Face .Seizures..Cataracts at 27.. Ovaries stopped working at 27..no babies.... broken heart.... hair fell out..nails fall off ..
ABOUT THIS CASE FILE
I was healthy until I was 26.. then my face started burning .. have to eat ice and stay cold all the time now. I was diagnosed with Facial Erythromelalgia.
Cataracts at 26 ..? Then my ovaries stopped working ( Premature Ovarian Failure) at 26 too ..
I couldn’t have children 😢.. I was so broken hearted. The biggest nightmares are grand mal seizures in the middle of the night .. I go to bed at home ..and wake up in the hospital and can’t talk or walk for weeks. Now my thyroid is working ( Hypothyroidism), my nails fall off, my bones are brittle (Osteoporosis at 46) and my hair has fallen out (Alopecia Areata ) and my Hematologist thinks this might ALL be because of a genetic condition..
Dyskeratosis Congenita ..? But I’m 46 and I was so healthy until I was 26 years old ? My doctor also told me that 46 % of people with DC will experience bone marrow failure. I’ve been Chasing a Cure all over the United States...the NIH , Mayo Clinic , John Hopkins, the Cleveland Clinic , ... and my prayer is that it will be found with you.