Sometimes, you just gotta be an unstoppable force…
What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it are scarce to non-existent? A disease affecting so few people, even your own doctor may never have met a patient with it?
Some people might despair; others might stoically soldier through the symptoms of painful ulcers in the mouth or genitals, eye inflammation, skin lesions, and arthritis. Then you have those who do something to fill the vacuum by volunteering or going to work in advocacy and awareness.
Founded in 1978 by the mother of a child with Behcet’s Disease, ABDA is a nonprofit organization dedicated to supporting, educating, and empowering the roughly 16,000 to 20,000 people diagnosed with Behcet’s in the United States. It runs fundraising and awareness events throughout the year, and operates a hotline, run by patients, to answer questions about living with Bechet’s. Board Members and hotline operators alike are volunteers—because they’ve lived Bechet’s first-hand.
These are people like Sandy McElgunn, a past president of ABDA whose first symptoms appeared when she was a little girl. It took her years to receive a correct diagnosis, but she still experiences overwhelming fatigue, migraine, joint pain, and painful mouth ulcers. McElgunn admits that staying positive can be difficult, but she’s thankful to have a loving family that supports her. And she, along with the other members of ABDA, has a mission to educate the medical community and lobby for more research.
Regardless of the outcome of this and other lobbying efforts, you can’t beat the feeling of knowing you’re helping someone, somewhere who really needs it. And you can’t deny how important it is to be part of an active community that’s bigger than yourself.
