Tracy Graham of Grandview, Ind., was diagnosed with Birt-Hogg-Dube Syndrome in 2013. The rare disorder—the condition has been reported in only about 400 families—affects the skin and lungs and raises the risk of kidney cancer.
So when Tracy found out about the opportunity to join scientists and researchers who were gathering to discuss this rare disorder, she and her mom, Janet, registered for the 6th BHD Symposium, sponsored by the Department of Urology at Upstate Medical University, and booked their plane tickets to Syracuse.
Now 750 miles from their home in southern Indiana, Tracy and Janet, are rubbing elbows with PhDs and MDs from some of the leading medical institutions, both in the United States and abroad.
“I wouldn’t miss this chance to learn more about this disease, especially since such information can be in short supply,” Tracy said.
Tracy, 44, who has lived with the disease all her life, but was only diagnosed two years ago, often knows more about the disorder than members of the medical community. Her medical appointments often start with the clinician asking her what new information she has about BHD.
“No one had ever heard of the disorder when I got my diagnosis,” Tracy said.
It pays to be well versed in BHD issues, especially since the disorder is genetic. Tracy’s father has since been diagnosed with BHD, and others in her family are being tested as well.
“Knowing you have BHD is so important since constant monitoring to assess symptoms can keep one in good health,” she said. Graham undergoes annual kidney screenings, so doctors can remove tumors before they metastasize or spread.
Routine lung screenings are also necessary, as the disorder causes cysts or air pockets on the lungs that could lead to a collapsed lung.
For Tracy knowledge is power, and learning as much as she can about this chronic disease—as she is doing at the conference—helps her live a full life, participating in activities with her three children, assisting children with special needs in five Indiana school districts and running half marathons.