Like many people who suffer from a rare disease, Becca Boone has spent a lot of time in doctor’s offices. Becca, who is now 57, can speak in detail about a decade of tests, multiple misdiagnoses, more tests, and hours spent in waiting rooms and medical offices across the country. It all began ten years […]
A rare disease patient shares her fight to find the solution she desperately needed. By Hiba Tohmé My name is Hiba Tohmé, a 45-year-old young woman, mother of a 19-year-old boy. I led a quiet and serene, dynamic, and hard-working life until that famous March 2020; when the world capsized following the pandemic, when a […]
I’d spent the previous three years bouncing from specialist to specialist; sitting in exam rooms with an unusual constellation of symptoms and abnormal laboratory results while physicians scratched their heads.
Last updated: October 31, 2022
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