August Is SMA Awareness Month

August Is SMA Awareness Month

August 7, 2017 Personal 0
Parker the pug and I sitting in the park

I haven’t written a blog post in a while, so what better time than now? August is SMA awareness month and I have decided to start writing again. I wrote a post several years ago about my personal experience with SMA. A lot of good news has happened for families affected by SMA since then, but first, let’s learn a little bit about Spinal Muscular Atrophy.

About Spinal Muscular Atrophy

Did you know that SMA is the #1 genetic killer of young children? And that 1 in 40 people carry the SMA gene? Chances are someone you know is a carrier of the SMA gene! The good news is that both parents need to be carriers for it to have a 25% chance to affect their children. Here is a great infographic showing the odds of having the gene from the Gwendolyn Strong Foundation on Instagram:

The Good News

We now have an approved treatment for SMA and several more treatment options are currently in testing! Spinraza is the first treatment for people with SMA and has been approved in Canada, Europe and the USA. In Canada, Spinraza is now undergoing a Common Drug Review by CADTH. If approved, this will mean government funding to cover the cost of Spinraza treatment. I have been reading some of the stories of people who are taking Spinraza and the results are very encouraging.

What This Means For Me

The treatment is more than I can afford to pay out of my own pocket and I may not be able to receive the spinal injections for the Spinraza, yet I’m excited for the future. Fortunately there are several oral treatment options on the horizon which will probably be a better choice for me. I know that none of these treatments will totally cure me. I will never be able to walk, but it is good to know that I may get some functions back. The young people will benefit the most from these treatments. For them, there could be a cure in the near future and that is what excites me the most.

 

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