Many of you might not know that August is SMA Awareness Month. Don't feel bad! Until recently, I didn't either. Last year, I made a decision to learn more about my disability. Of course I knew the basics but that was all I really cared to know.
For most of my life, my coping mechanism in terms of my disability was to know as little as possible. SMA can have a scary, degenerative prognosis so I thought that maybe if I didn't know what doctors predicted, I could prevent it from coming true. No knowlege is power, right?
Wrong!
As I started to see more specialists last year, I could no longer stick my head in the proverbial medical sand. I had to get educated on my disability. I needed to ask informed questions because, as I quickly found out, if you don't fight for your health, no one will.
So let's tackle this awareness thing together. With the help of an article from SMA News Today and the Gwendolyn Strong Foundation, I have put together 5 facts about SMA. Let's start learning!
1. SMA is the #1 genetic killer of infants and young children. Those with type 1 SMA do not typically live beyond their second birthday.
2. There are four types of SMA, with type 1 being the most severe and type 4 the mildest. I have type 2, which means that I was able to sit on my own as a child but have never been able to walk or stand. I want to be very clear that SMA affects muscles and not intelligence. What type you are is now determined by a DNA test where you would be checked for how many copies of the SMN2 gene you have. The more copies you have, the better chance you have for muscle strength. So far, I have not worked up the nerve to take this particular blood test but I want to find out eventually. I was diagnosed with a muscle biopsy on my 1st birthday.
3. SMA can happen to anyone, regardless of race or gender. While it is an inherited disorder, some people can be born with SMA without a trace of it in their family history.
4. 1 in 40 people unknowingly carry the gene that causes SMA. That could be 1 person in every Starbucks or 10 people on a large jet. It's much more common than we could imagine but the disorder is still rare because it requires both parents to be carriers of the gene in order to pass the gene on to the child.
5. The National Institute of Health (NIH) announced that out of 600 neurological disorders, SMA was the closest to treatment. In 2016, the FDA approved Spinraza, the first ever drug to be used to treat SMA. While it is not available in Canada yet, the news is groundbreaking in terms of medical breakthroughs. I honestly did not expect this to happen in my lifetime.
So there you have it. Need more info? Visit my FAQs page for more details on my life with SMA. One of my favourite quotes is "When you know better, you do better." So what does this mean for you and I now that we know more about SMA? We can have more empathy, more understanding to others with chronic illness, and more love for those who might be going through an illness, chronic or otherwise.
Thanks for joining me in getting an education. School's out!
- Crissi xo