Natalie Katz, MD, pediatric neurologist and co-director of Duke University’s Children’s Neuromuscular Program, explains why building a diverse care team is essential for managing the many ways SMA affects the body.

That is a great question. There are a lot of people that can and probably should be involved in their care for a variety of different reasons. 

So the neurologist, like myself, to help with understanding the disease pathophysiology, how it’s affecting the body, any of the new therapies that come out, keeping updated with clinical trials and what’s going on in the field from the SMA standpoint.

But then, if we just kind of go head to toe through the body, lungs are very important, right? Everybody wants to breathe, and patients with SMA can have changes in how their breathing muscles work, how well they’re able to do that both during the day and night. 

And so it’s important to have a pulmonologist — a lung doctor — who can monitor your lung function, make sure that you’re doing well both during the day and during the night. And then, if there is any respiratory illness that comes up, how do we take care of you through those times of illness? And so they have an instrumental role in that.

Some patients with SMA can have trouble with their bones. So having an orthopedic doctor, like an orthopedic surgeon, or sometimes someone from physical medicine and rehabilitation — or rehab, as we commonly call them, or PM&R — they also do a lot of spinal alignment, bone health sorts of things. So they can also be very important in managing your care from a physician’s standpoint.

Some patients will need help with nutrition. Sometimes it can be hard depending on how well you’re able to move, how well you’re able to digest, because movement aids in digestion and bowel movements and other things. So some patients will need assistance from a gastroenterologist — or a GI doctor — or somebody that helps with the nutritional side of things.

And then there are other providers who are not necessarily physicians but are also instrumental in caring for patients with SMA. So people like physical therapists and occupational therapists — not only to help with strength, but how do you maneuver around your home and your environment so you can do that safely.

Things to think about as you grow and you age and you transition to college or job or independent living. What sorts of things do we need to think about to accommodate you during those times of transition?