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A woman in a manual wheelchair looks in a telescope over a landscape with doctors office symbols as a beam of light from the telescope focuses on one with a heart symbol

Illustrated by Brianna Gilmartin

Tips for Finding Healthcare Providers

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By Editorial Team

2 min read

It can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can trust is really important to feel in control and confident with your care. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out how they have found the right healthcare providers and to gather any advice.

We asked them: What tips do you have for finding the right healthcare providers? Below are their responses.

Portrait of SMA Advocate Mike Noon

Finding the right fit in a provider can take time

Mike: Finding the right healthcare provider is like finding the right partner. You might have to see a few before you find your fit. I have seen many doctors and specialists, and the ones who actually took the time and listened to me were the ones where I found to be a right fight.

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I have always lived my life by trusting my gut. So far it hasn’t failed me. Remember we need to be our own advocates when it comes to our own health. We know our bodies best. Find a doctor who will always address your concerns.

Portrait of SMA Advocate Chaz Hayden

Don't be afraid to get a second opinion

Chaz: This is all about seeing somebody who makes you or your child feel comfortable. When I was diagnosed at the age of 3 months, the doctor told my mom I wouldn’t live past one year.

Obviously, that wasn’t the right person for us. My best tip is to ask for referrals and join communities online (like this one) or in your area.

Ask other people with SMA who they recommend and then do your own research before making an appointment. Just because everyone sees this one doctor, doesn’t mean they’ll also be the best fit for you. And don’t ever be afraid to get a second opinion.

Portrait of SMA Advocate Allie Williams

Get recommendations from others in the community

Allie: Ask for recommendations from other people in the location or even get recommendations from other trusted doctors as to which provider they would suggest. 

Once a provider is chosen and an appointment is confirmed, the best way to know that it is the perfect healthcare provider is to ask a bunch of questions during the intake with that provider. Find out how much they know about spinal muscular atrophy or any other specific disorder. 

Make sure that everyone is on the same page with available and upcoming health choices. Make sure they are willing to listen to concerns and respect body autonomy and how well those living with spinal muscular atrophy know their bodies and their needs.

It is vital to be able to speak up if any healthcare provider seems dismissive of conversations about health needs. They also must be willing to treat someone as a whole person, take symptoms as presented, and not just treat everything as "because of spinal muscular atrophy..."

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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