Connect with others who understand.

sign up log in
About mySMAteam
SMA
NEWS

What Makes a Good Doctor for People With SMA?

Posted on January 13, 2022
Article written by
Bryce Parks

Having a good doctor you can trust is a vital aspect of health care for everyone, but it’s especially important for those living with spinal muscular atrophy (SMA). The qualities of a great doctor are a bit more specific if you’re living with SMA, but it’s definitely possible to find a specialist who has everything needed to make them the ideal partner in keeping you healthy.

Following are some of the key qualities I look for in a doctor.

Patience

One of the best traits a doctor can have when it comes to SMA is patience in the highest degree. On a surface level, patience invites trust and brings a stability to the environment that welcomes in-depth conversations. On a more personal level, people like myself are at risk for serious pain when not treated with care. A basic examination could be a real problem if a doctor accidentally moves a person with SMA hastily. Considering the rarity of SMA, it’s not uncommon for a typical doctor not to realize that a person with the condition is unable to move the same way as other individuals. Greater awareness of SMA on the doctor’s part can potentially save someone with SMA from a lot of otherwise avoidable issues. That awareness, in part, can come from a conversation — and patience is what makes that conversation possible in the first place.

Willingness To Learn

Honestly, some doctors know nothing about SMA simply because of its rarity. Doctors cannot know everything. After an initial meeting with a doctor, however, it’s reasonable to expect them to try to learn more about the condition. For me, a doctor is worth seeing consistently if they make the effort to learn about SMA — though finding an SMA specialist in addition, for the sake of safety, is a good idea. Some people would consider a doctor’s unfamiliarity with SMA to be a negative, but I see positives in compromise. Great doctors show willingness to understand and learn; great patients show patience and cooperation along the way.

Openness and Trustworthiness

I tend to have the most successful connections with doctors who are personable and invite trust. People who respect boundaries and find ways to match the openness of a conversation by sharing aspects of their own lives are usually good to talk with. Having a conversation with a doctor during a visit can feel a bit awkward since a guardian or caretaker is usually present in the room. Doctors who acknowledge the situation and offer privacy can help foster trust, especially with teenagers and young adults. Under the right circumstances, a person with SMA is more likely to respond positively and feel additional comfort in sharing information.

A Sense of Safety

You should always have a psychological sense of safety with the doctor. Regardless of their personality, they should not provoke any type of negative emotion during visits. I usually have a sense of discomfort at doctor’s appointments — but never because I dread my doctor. I like to remind myself that they are around for my own well-being, and I should harbor no negative energy toward people trying to help me.

The best part about finding a solid connection with a doctor is that they are there to stay for many years. Being open and cooperative can help in identifying a doctor with good traits and establishing a relationship based on trust.

What qualities do you look for in a doctor? Take the poll and share your thoughts below in the comments section.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

Bryce Parks has SMA type 2. He hopes to make a difference to people through a variety of creative forms. Learn more about him here.

Recent news

Nobody loves going to the emergency room (ER). Odds are, something bad happened that requires...
Posted 01/20/2022

Emergency Room Advice for People With SMA

Nobody loves going to the emergency room (ER). Odds are, something bad happened that requires...
Posted 01/20/2022
Corrective surgery for scoliosis in children with spinal muscular atrophy (SMA) type 1 can lead...
Posted 01/18/2022

Scoliosis Surgery in Kids With SMA Can Cause Serious Complications, Research Finds

Corrective surgery for scoliosis in children with spinal muscular atrophy (SMA) type 1 can lead...
Posted 01/18/2022
Andrew and Henry DeYoung, brothers with spinal muscular atrophy (SMA), completed doctoral theses...
Posted 01/11/2022

Brothers With SMA Complete Their Doctorates Weeks Apart

Andrew and Henry DeYoung, brothers with spinal muscular atrophy (SMA), completed doctoral theses...
Posted 01/11/2022
Nusinersen, sold as Spinraza, has been shown to prevent decline in breathing abilities in some...
Posted 01/06/2022

Breathing Remains Stable for Infants With SMA Type 1 Taking Spinraza, Study Shows

Nusinersen, sold as Spinraza, has been shown to prevent decline in breathing abilities in some...
Posted 01/06/2022
In a recent webinar, four young adults discussed transitioning from pediatric to adult health care while living with disabilities.
Posted 01/04/2022

Young Adults With Disabilities Cite Pitfalls in Transitioning From Pediatric to Adult Care

In a recent webinar, four young adults discussed transitioning from pediatric to adult health care while living with disabilities.
Posted 01/04/2022
A recent study found that a wearable cyborg limb can be used to help people with neuromuscular disorders such as spinal muscular atrophy...
Posted 12/30/2021

Wearable Cyborg Limb Shows Promise as Walking Treatment for SMA

A recent study found that a wearable cyborg limb can be used to help people with neuromuscular disorders such as spinal muscular atrophy...
Posted 12/30/2021
A new study highlights the benefits of adaptive sports to improve the physical and psychological...
Posted 12/29/2021

Wheelchair Hockey and Other Adaptive Sports Score Big Health Benefits for People With SMA

A new study highlights the benefits of adaptive sports to improve the physical and psychological...
Posted 12/29/2021
Over the years I have pieced together a few strategies for dealing with the cold season when...
Posted 12/28/2021

Winter Safety Tips for People With SMA

Over the years I have pieced together a few strategies for dealing with the cold season when...
Posted 12/28/2021
With a newly earned degree in speech pathology, I began my career as a school-based speech...
Posted 12/23/2021

The Challenges of Working With SMA

With a newly earned degree in speech pathology, I began my career as a school-based speech...
Posted 12/23/2021
Pharmaceutical company Scholar Rock is seeking participants for a clinical trial of apitegromab,...
Posted 12/22/2021

Participants Sought for Clinical Trial of SMA Muscle Therapy Apitegromab

Pharmaceutical company Scholar Rock is seeking participants for a clinical trial of apitegromab,...
Posted 12/22/2021
SMA News

Become a Subscriber

Get the latest news about spinal muscular atrophy sent to your inbox.

Not now, thanks

Privacy policy
SMA News

Thank you for signing up.

close