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Transitioning to Adult Care

Last updated: March 2022

Something that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough to find a good team of doctors who are knowledgeable about our condition and then there’s the unavoidable day when you’re forced to repeat the process all over again.

This is a good and bad thing.

Lack of doctors to treat adults with SMA

It’s good because it means people with SMA are getting older which is a testament to advancements in medicine and our understanding of our disability. But, until recently, patients with SMA weren’t predicted to outlive adolescence and sadly a lot still aren’t.

Because the majority of the demographic are children, there aren’t many adult doctors or specialists who are knowledgeable about SMA and how to best provide care.

Of course, most doctors are willing to learn, but should we always be obligated to educate? Or should doctors be putting in the research themselves? It’s probably a little bit of both since a patient should be open about their care preferences no matter who they’re seeing.

In my opinion, even if you’re with a top SMA specialist, you should always feel comfortable asserting your opinions. However, seeing a doctor that knows nothing about SMA is just as good as seeing no doctor.

No longer able to see my pediatric doctors

These were all my concerns when I had to transition from my pediatric specialists: pulmonologist, GI, and neurologist. Sadly, it’s not always up to the doctor to stop seeing someone because of their age. Most of this is decided by rules created by hospitals or health systems.

But now what? I was told I can’t see my pediatric doctors and I have no idea who else is out there. I’m finally on a routine that keeps me healthy along with a team I trust, and they trust me to understand my body.

I felt like I was just put out to sea with no life jacket or direction of the nearest land. This is precisely the time you need to start speaking up and advocating.

Recommendations to find new providers

Before ending your last appointment with your pediatric doctor, ask them for recommendations and more than one. Do they know the other doctor personally? Have other patients transitioned successfully to them? Is the new doctor familiar with SMA or do they see any other patients with disabilities?

I think it’s really important for your pediatric and adult doctors to be connected on some kind of professional level at least during the transition period. That way your new adult doctor has a reliable contact in case questions come up.

Navigating issues with insurance

For example, unfortunately, a lot of adult doctors aren’t experienced with helping fight with insurances and neither are their nurses or office staff. I’ve found this to be the most significant difference between pediatric and adult care.

So far, my adult specialists are great but their staff isn’t always the most trained or helpful.

The importance of advocating for myself

I’ve learned that advocating for myself is more important now than it’s ever been. It can get frustrating and through this transition process, I’ve had to leave doctors for that reason.

My best advice is to speak with your pediatric doctors early when it gets close to the age limit and start to do the research. Call doctors and get a feel for them and their staff. Communicating effectively over the phone can be a make or break.

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