SMA Pride Month: Looking Back & Looking Ahead

It feels like the month has really just flown – I can’t believe that I’m writing my last SMA Pride Month post for the year! Since it’s the end of the month, I’m feeling kind of nostalgic, so I thought this week I’d write a little bit about looking back and looking ahead, and doing some reflecting.

Heather, a white woman in a power wheelchair, is wearing a leopard smocked dress and sunglasses. She's in front of a lake and lots of greenery and grasses.

In some ways, it feels like the whole landscape around SMA has changed in the last five-ish years. I mentioned it in my post about starting treatment, but for the VAST majority of my life, I never really even imagined I might someday be able to take a medication that treats SMA. It just wasn’t even a blip on my radar. There were different therapies that I did (physical, occupational), and devices that I used to treat the symptoms, but I didn’t think about being able to take something that would treat SMA itself.

For so, so many years, I really only knew my sister and one other person with SMA. It’s still so exciting to me each and every time I connect with someone who has some sort of connection to SMA themselves. It could be an isolating experience. I was (and am) surrounded by an absolutely incredible group of people, but their connection to SMA was me/my family. They didn’t have any other knowledge. Even doctors were often not familiar at all (and honestly, they’re still not always well-informed), and I learned early on that my family and I had to be the medical experts when it came to all things SMA.

But recently, little by little, slowly but surely, I see change happening. There are three different treatments available for SMA now! More states are adding SMA to the list of conditions that newborns are required to be screened for, which saves families from the stress of trying to find a diagnosis and allows them to access treatment SO much earlier. More medical professionals are aware of SMA (though there is still a LONG way to go here).

And I’ve made so many more personal connections of people with SMA, which has been valuable beyond words to me. Having a group of people who understand, to some degree, the experiences that you’ve had; people who are able to offer advice and support and just friendship. I’m so grateful to social media for helping me find and connect with so many others in the SMA community – sometimes intentionally, and sometimes coincidentally.

All of this is to say that I’m hopeful about the future of the SMA community – the generation below me (at least here in the US) will have access to treatment options and access to a vibrant and growing community, both in person and online. I’m looking forward to seeing where we are next year during SMA Pride Month.

Leave a Reply