Written by Julie Ostroff on September 15, 2022
My name is August Rocha, and I am an adopted, Chinese-American, transgender TikTok content creator living with Behçet’s disease. While I’ve been symptomatic all my life, I wasn’t diagnosed with Behçet’s until age 21, in the summer of 2016.
Behçet’s disease is a rare form of… Read More
Written by Julie Ostroff on July 29, 2022
I’m Rebekah Britto, Mrs. Massachusetts Petite 2022, and I have both Chiari malformation and Ehlers-Danlos syndrome (EDS). My rare disease journey began in 2013, when I started struggling with symptoms including passing out, vertigo, tinnitus, vision disturbances, and more. It took about a year of going back and forth between… Read More
Written by Julie Ostroff on July 1, 2022
This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in 2015, around the time that I turned 30 and was living on my own in Cape Town.
My journey with… Read More
Written by Julie Ostroff on June 24, 2022
I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50%… Read More
Written by Maia Craig on February 17, 2022
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Riann’ s journey with Cockayne Syndrome and his family’s wishes for the rare disease community. If you want to share your rare… Read More