Sep. 15, 2022
TOPIC: Patient Stories
Posted by Julie Ostroff
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 vasculitis that causes inflammation in the blood vessels. I’ll be honest, living with Behçet’s is not all rainbows and sunshine. The diagnosis process for folks with Behçet’s often takes upwards of five to ten years. After a childhood full of unanswered questions and chronic pain, I was plagued by genital and oral sores. Seeking answers, I found a specialist in the Rheumatology Department at Mount Sinai as I was living in New York City. She took one look at me and diagnosed my situation perfectly. The hope that my diagnosis gave me was unimaginable.
As for what living with Behçet’s Disease is like, my answer is as up in the air as my symptoms. Sometimes I have really easy days where I can live an average life. I can go out with friends, run errands, and go to sleep happily. Other days, I wake up in severe pain, and can’t move or sleep. I use a walker, and sometimes a wheelchair, but even so, I am constantly keeping up with my Behçet’s and its unpredictability. It is the bane of my existence, but also one of my greatest gifts.
The future of Behçet’s is unknown. Some say we’ll never find a cure. I say there’s always hope. With organizations like the National Organization for Rare Disorders (NORD), I am optimistic about the future of Behçet’s.
I share this story to let people know they are not alone. I don’t know what impact I will have, but the very idea that one person out there could read this and feel less isolated in this world is enough.
The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.