’Tis the season for giving thanks and celebrating the upcoming new year with family and friends. As you gather together during this festive time, it’s an excellent opportunity to help educate others about spinal muscular atrophy (SMA). You may find that people want to learn about your child’s SMA but are afraid to ask for fear they are intruding or overstepping. If you’re ready to share your SMA story, this article can help you get started.
The information below explains what SMA is in easy-to-understand terms, why it’s important for your child to stay healthy, and where people can go for additional information and resources. While sharing these details with family and friends can be helpful, it’s also important to share your personal perspective, such as your child’s interests, achievements, and how SMA affects your family’s daily activities. Your own story paints a fuller picture of what SMA is and how it impacts your life.
- SMA is a progressive, rare genetic disease, yet it is the number one genetic cause of infant death
- About 1 in 50 people in the United States is a genetic carrier of SMA, and most don’t know it
- SMA affects about 1 in every 10,000 babies born in the United States each year
- The genetic root cause of SMA is when both copies of the SMN1 gene (1 from each parent) are missing or not working properly
- When the SMN1 gene is missing or not working properly, the body cannot make enough survival motor neuron (SMN) protein, which is needed for motor neuron cell survival
- Motor neuron cells communicate with the muscles and tell them when and how to work properly
- Without enough SMN protein, motor neuron cells become weaker and weaker and eventually stop working, lose all function, and die
“I tell people that SMA is a degenerative neuromuscular disease that affects all the voluntary muscles in the body––even muscles for breathing and swallowing.”
– Tara, mother of a child with SMA Type 1
Supporting the SMA and rare disease communities
As family and friends learn more about SMA, they may ask how they can support you and the SMA community. You can find a list of SMA and other rare disease advocacy organizations here to share with them.
SMA and illness
Because SMA affects your child’s respiratory system, cold and flu season can be especially worrisome. If family and friends invite your child over, it’s important to remind them that your child can’t be around others who are ill. You can explain that SMA affects the muscles used for breathing and that it can be difficult for your child to overcome illnesses–even the common cold.
It’s a good idea to wash your hands with soap and warm water often to help prevent the spread of germs. Also, ask those around your child to use good hygiene, such as frequently washing their hands and covering coughs and sneezes with tissues or with their arm. The more people know, the more they will go out of their way to help ensure your child stays healthy and enjoys the holiday season to its fullest.
AveXis wishes you and your family a happy and healthy holiday!
The preceding article is content provided by our sponsor, AveXis, Inc. The views and opinions expressed in the content above are not the views and opinions of SMA News Today or its parent company, BioNews Services, LLC.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
©2019 AveXis, Inc. All rights reserved. US-UNB-19-0147 12/2019
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