Nusinersen for spinal muscular atrophy

Transcript

Byron: Hey guys. My name's Byron. I'm 16 years old and I've got spinal muscular atrophy Type 3 or SMA for short. SMA is a genetic disease, which means that my muscles, my spinal muscles, and my nervous system aren't as strong as others. This is because my body can't produce enough of the right proteins.

Because of this my muscles and my nervous system get tied over time. That's why I come for regular check-ups.

But if you're watching this video, you already know about SMA. I'm here to talk to you about a treatment that I've been receiving called Nusinersen. Nusinersen helps my body make more of the right proteins that I'm missing. I've been receiving treatment for over a year now at the Queensland Children's Hospital, and it's really helped me because my muscles don't fatigue as quickly anymore.

The best part about the procedure is it's super quick. The stuff are really nice and it doesn't even hurt. If you're having Nusinersen for the first time. Believe me, there's nothing to be worried about. Let me show you how it's done.

The journey begins in the surgical admissions lounge. After you sign in, a nurse will meet you and take you into admissions.

Then you'll get some numb cream on your back so you don't feel any pain during the procedure. Then you get to hang out here and have some fun while you wait. You're probably really hungry from fasting. My advice is to stay as entertained as possible.

Doctor: Byron, we're ready for you in theatre, mate.

Byron: Sweet. Let's do it. Let's get outta here. Hey, right.

Thank you. Before you go into theatre, I'll just double check your details and you'll meet some of the team.

Welcome to theatre. This is where it all takes place, and these are all the amazing stuff.

This team will always look after you and make sure that you're safe every step of the way. While the doctors are doing their thing. I like to be distracted and focus on my happy place.

And there you go. All done off to recovery.

Now that I'm done, all I have to do is lie on my back for an hour and enjoy my chocolate.

So if you're about to have this procedure, there's really nothing to worry about. Now that I have my treatment, I'll be back to shooting hoops and having a lot of energy. I'm Byron, thanks for coming on this journey.

And remember, don't let anything stop you from doing what you love.