Brenda Song, MD, is a neurologist who directs the UMass Duchenne Muscular Dystrophy Program, and she is a pioneer in organizing multidisciplinary care for Duchenne populations. She shares tips on how families can find a care specialist, from trusted clinic networks to online support groups.
Transcript
For families who are interested in finding a DMD specialist, one source would be the MDA — the Muscular Dystrophy Association — which has multiple clinics across the country for the care of patients with neuromuscular disorders, including DMD.
Another option is to look at family support groups. Organizations like PPMD and Cure Duchenne have certified clinics across the country, as well as other clinics that patient advocacy groups are well familiar with.
Last but not least, I know many families — if their sons with Duchenne muscular dystrophy have issues that aren’t being managed well by local clinics — often turn to social media. There are DMD-specific groups where they can check in with other families and hear about their experiences with different providers.
It’s much easier these days. Many families tell me they actually found us through the internet, and I think that’s become quite easy to do.
