Hugo Trevino, who has SMA type 3, describes all the types of needs his multidisciplinary healthcare team handles for him, and the part he plays in ensuring they coordinate.
Transcript
I’ve been very fortunate that my care team is actually all at Northwestern Hospital. They were actually one of the first clinics that started doing multidisciplinary care. So that first off consisted with my neurologist, my pulmonologist, and then they added on a cardiologist. Outside of there, I also see an [occupational therapist] and [physical therapist] at that same clinic.
I also have my primary care doctor. That one is outside of Northwestern, but they do communicate with each other, and they do share files or documents or whatever we wanna call it. And I have signed the HIPAA forms for them to be able to talk to each other if I ever get sick.
And then my two main people is usually my primary care doctor or my pulmonologist that I rely heavily on for any respiratory issues that kind of come up. And then of course, my neurologist is the one that helps me with any type of like durable medical equipment. So they’re super important with getting, you know, Hoyer lifts, wheelchairs — things like that — updated within my house.
And I’m trying to think of what else. Other doctors that I’ve had, I’ve seen like bone doctors, orthopedic doctors, but that one’s been a while. That was more when I was younger for my spinal fusion that I had. But yeah, otherwise my team, like I said, it consists of my neurologist, my pulmonologist, and cardiologist, and then my primary care doctor. And that’s a big chunk of people who I see every six months or about. But my primary care doctor, I probably see them once a year only.
