Achieving quality Friedreich's ataxia care in rural areas
George Wilmot, MD, PhD, talks about the diagnosis and care challenges faced by Friedreich’s ataxia patients and healthcare teams in rural, underserved areas.
About George Wilmot, MD, PhD
George Wilmot, MD, PhD, is a board-certified neurologist affiliated with several hospitals, including Emory University Hospital. He also serves as an associate professor at Emory University School of Medicine’s Department of Neurology and adjunct associate professor at the school’s Department of Pediatrics. He is an ataxia clinical researcher and he started the Cooperative Ataxia Registry.
Transcript
There are difficulties in coordinating care teams in complicated diseases that have systemic manifestations, like Friedreich’s with the cardiac, the diabetes risk, the orthopedic abnormalities. That’s just so much harder in rural environments. So the primary care has to take on, you know, a higher amount of responsibility with that.
Establishing the diagnosis can be difficult just because I can diagnose Friedreich’s pretty much from across the room — and have a few times — just at least in its typical phenotype, which is the most common, it has a certain look. And so that’s easy for me as a Friedreich’s specialist. In rural environments, I think people will very likely not have seen any Friedreich’s patients, maybe not even have heard about it. And that can be a real difficulty, a real hindrance to a quick diagnosis.
It’s always a challenge. And that can be met by attitude of the rural providers of being willing to really dive in and get to know Friedreich’s as well as they can and not being afraid to step up to the plate a little bit. And also through referral to other specialists and centers that kind of are more used to taking care of Friedreich’s.
David Lynch, MD, PhD, is the director of the Friedreich’s Ataxia Program at Children’s Hospital of Philadelphia.