Qualities of a Good SMA Specialist
Last updated: April 2022
When it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the personality a good fit? Is this person up to date on the latest research and treatments? Different people have different priorities on who they want to work with. Read what our team of advocates here at SpinalMuscularAtrophy.net had to say on qualities that stand out to them in a good specialist.
We asked our team of advocates: What are some qualities that stand out in a good specialist?
Find someone who listens and is compassionate
Mike: Listening to me is my number one quality. I had a doctor through my 20s who used to ask me what my health goals were. I think that’s very important.
Medicine is not a "one size fits all." I believe a good doctor will tailor the health journey to each patient they have.
Compassion is really important. Doctors are sometimes giving us life-altering news. A doctor’s office can be a scary and stressful place, especially when receiving life-altering news.
My experience has run the gamut. From compassion to matter of fact. Doctors who can show some compassion can sometimes offer hope with a diagnosis.
I once had a matter of fact experience with a doctor in my teens who was very blunt. I remember her telling me that I would be confined to a wheelchair before I turned 30. I’ll be 45 in April, and I can still stand and walk a little. Doctors aren’t always right.
Each person with SMA is different
Chaz: I’ve always been a big advocate for going to doctors who treat the patient, not the disability. There are so many SMA clinics and, from my experience, they only see your disability and say things like, "This is SMA protocol."
Maybe that works for some people, but I need doctors who understand that everybody is different and SMA can be different from patient to patient and how it should be treated.
A good specialist should listen and work with you. A good specialist should be willing to admit when they don’t know something and refer you to another doctor or put in the work to do the research.
A specialist should be knowledgeable and an expert on the condition
Allie: A knowledgeable provider is important for having a rare disease like spinal muscular atrophy. If someone has to bring information about SMA to a specialist, this probably would not be the best fit.
It is a healthcare partnership in a way and new treatments are approved and trialed, but specialists should be keeping on top of new developments in their area of expertise. Ask directly what they know about spinal muscular atrophy and how SMA affects all aspects of life when deciding on a specialist.
Have you shared your SMA diagnosis story with us yet?