As a lifelong SMA patient, the sheer number of people on my healthcare team rivals the size of my immediate and extended family combined. Keep in mind that I come from a southern family with multiple cousins, aunts and uncles, grandparents, and even a couple of non-blood relatives.
Likewise, my healthcare team consists of pulmonologists, neurologists, radiologists, physical therapists, occupational therapists, primary care doctors, the mad scientists from “Stranger Things,” and other specialists I’m probably forgetting about. I’m not even counting things like dentists and eye doctors on this list, but needless to say, my team is pretty massive. As such, I know a thing or two about what makes a good doctor and what makes a not-so-great one.
If you or someone you know has SMA, don’t settle for a mediocre doctor or specialist. Treating someone with SMA requires another level of expertise, and you should only seek out the best. The following points are my top qualities for any doctor or healthcare professional.
This may seem obvious, but it’s amazing how many SMA friends I have whose doctors have limited knowledge of SMA. Yes, SMA is rare and not every person in the medical field is an expert on it. Still, you should find professionals who are capable of tending to your healthcare needs, especially for things like respiratory issues, preventing illnesses, and acquiring Spinraza. If there isn’t a qualified specialist in your area who has experience with SMA patients, consider traveling to another area that has better resources.
With knowledge comes experience. The more experiences your doctors have with other SMA patients, the better. Granted, not everyone can see worldwide renowned neurologists and pulmonologists on a regular basis; but if you can find someone who has other SMA patients, you’ll have a better chance of getting the care you need. Issues like trying to figure out the right BiPAP settings and combatting pneumonia are common for many people with SMA. If a doctor has experience tackling these issues with one SMA patient, they’ll be better prepared to work with others in the SMA community.
The last, and in many ways most important, quality is communication. I’m not just talking about a doctor who can effectively explain a patient’s diagnosis or medical situation, though both of those are important. I’m talking about doctors who talk directly to their patients and not to their parents or caregivers.
I can’t tell you how many times I’ve encountered doctors or specialists who only talked to my parents; or when they did address me, they talked to me like I was a child. Fortunately, the ones I have now and whom I’ve worked with for years are some of the best. My pulmonologist and neurologist, especially, are top-notch communicators, and they’ve always treated me as a person and not just another patient. It helps, too, that my pulmonologist and I spend half of our appointments just talking about “Star Trek” and about how dorky he was in high school. During our last appointment, he told me he once spent two days working on a geometry problem, prefacing the story with “and here’s why it took me until later in life to get married.”
Finding the right team of healthcare professionals is essential for anyone living with SMA. Whether you’re seeking out a new primary doctor or a specialist, don’t take this task lightly. Find one who’s honest, communicative, knowledgeable, and reliable. And if you can find one who’s an unabashed dork, it’s an added bonus.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.