THE FACTS: WHAT YOU MIGHT NOT KNOW ABOUT SMA

As most of you are probably wondering, Spinal Muscular Atrophy is a motor neuron disease that causes muscle weakness, and will eventually lead to death. When I was born in 1990, doctors didn’t have much information on this disease. The only advice they could give my parents was to go home and wait for the inevitable. What’s the inevitable? Well, SMA is the number one genetic killer in infants under the age of 2, and doctors suspected I wouldn’t live past 2 and a half years. Imagine that. Imagine being told that your little one only had a few short years to live and to cherish every moment you had with her. That has to be a parent’s biggest fear. Unfortunately, for many newly diagnosed infants, this devastating prognosis ultimately decides their fates. I happen to be one of the lucky ones.

My parents started noticing abnormalities when I was just 5 months old, and a simple muscle biopsy determined the problem. I was diagnosed with type I Spinal Muscular Atrophy, Werdnig-Hoffmann Disease. With type I, people often have poor head and neck control, respiratory problems, and difficulty walking which, as you might assume, requires equipment such as wheelchairs, bi-paps, etc. Swallowing is another area that is often affected, and can worsen over time. There are also three other types to this disease, each of which decrease in their level of severity. In fact, type IV is considered adult onset and doesn’t occur until 35 years of age or older.

Presently, scientists have grown incredibly hopeful with this disease and are discovering drugs that may benefit those inflicted with Spinal Muscular Atrophy. Over the last decade or so, breakthroughs have been made and trials have been held that suggest a cure is within our reach. This is why it is so important to continually raise awareness about SMA. We’re on the brink of something huge, and that something is a cure.

For more information about this disease, be sure to visit http://www.fsma.org/FSMACommunity/UnderstandingSMA/.

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

3 thoughts on “THE FACTS: WHAT YOU MIGHT NOT KNOW ABOUT SMA

  1. Nice job Alyssa!!! When you were diagnosed, it was a real scary time for Mom and I…we were young and needing to find our way. But we promised to do our best for you and your brother! Apparently, we have done a pretty good job! You have so many talents and gifts and you make us proud every day!

  2. Alyssa, I’m grateful for your blog. I’m doing research for a series of science fiction novels I’m writing, featuring a main character who has SMA type II. I don’t personally know anyone with SMA, and your posts are like a window into what it’s like to live with this disease. It’s more in-depth than the clinical descriptions on medical and fundraiser sites. Thank you for sharing so much.

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