If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city, your county, maybe even your state.
And short of attending a national conference or support group meeting, the odds of being able to meet someone else with Behcet’s are extremely low.
But thanks to the immediacy and accessibility of social media, it’s possible to bypass those geographic barriers completely and hear other people’s experiences.
In 2012 the Vasculitis Foundation launched a video story project to bring awareness to the 15 types of vasculitis—including Behcet’s—and the unique challenges that come with diagnosing and treating each.
One of the videos features Dana, a Behcet’s patient from Nebraska. Though she experienced her first symptoms when she was 12 and got a possible diagnosis by the time she was in high school, doctors weren’t able to make a definitive diagnosis until 17 years after her original symptoms. Even then, it was only after she fell ill at a conference and needed to be rushed to the nearest hospital—which, fortunately for her, just happened to be the Cleveland Clinic!
While she now sees a specialist and is getting the care she needs, she still encounters difficulty trying to explain her disease to others. That’s why she’s a believer in learning more, and encourages others to find the empowerment that comes with awareness and education.
