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.One great example is the American Behcet’s Disease Association (ABDA).
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.Last August McElgunn and current ABDA President Deb Kleber took part in a broader effort to meet with members of Congress, urging them to support rare disease research and to support the 21st Century Cures Act—which would establish and fund an NIH “Cures Innovation Fund” for biomedical research. (The bill passed in the House last summer but has so far stalled in the Senate over disagreements on how to pay for the initiative and amid debate over loosening FDA approval requirements.)
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.