Hello everyone. So I wanted to start a conversation about starting your SMA journey. I am 24 years old, and have lived with SMA Type II my entire life, so I’m happy to share my experiences.
The following are just some tips I have for parents of newly diagnosed children. Since the diagnosis stage can be extremely overwhelming, it helps to talk about getting started. Veteran parents, please feel free to join in on this discussion and share your tips.
-Read up about SMA: There are more online resources for the SMA community today than ever before. SMA News Today, Cure SMA and many other sites provide great and easily accessible information for patients, parents and caregivers.
-Connect with Other SMA Individuals and Families: One of the best ways to cope with SMA is to engage with the SMA community. Attend conferences, connect with SMA families and individuals online, engage in forum discussions here and look for an established Cure SMA chapter in your area.
-Take It One Day at a Time: Even with the resources available today and the FDA-approved treatment Spinraza, nothing about SMA life is easy. For SMA parents, it’s important to take things one day at a time. There will be days that do feel overwhelming, and there’s nothing wrong with taking breaks and resting for your own sanity. No matter how much you sacrifice for your children, remember to take care of yourselves as well.
These are just a few tips I thought of, but I’d love to hear from some experienced SMA parents.
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