A spinal muscular atrophy (SMA) diagnosis can be overwhelming, whether it’s for yourself, your child, or another loved one. Friends and family members may be an essential aspect of your support system. However, you may experience an added sense of relief when you meet others who understand the effects of SMA first-hand and can thus truly relate to your situation.
It’s not always easy to Finding other people with SMA who live nearby. Fortunately, the internet has opened up a world of support if you know where to look. An online support network provides access to people across the globe who understand SMA. Although everyone’s story is different, hearing and learning from others’ experiences can be an invaluable tool for improving your quality of life with SMA.
Online SMA support groups bring people together from around the world. The benefits of support groups may include:
Research shows that 1 out of every 4 people with a chronic disease who uses the internet has sought out peers with similar health conditions online. Online platforms allow users to participate actively (by commenting and sharing) or passively (by simply reading stories and information from others). Unlike an in-person setting, online support can be a less intimidating environment to find support at a level that makes you feel comfortable. If you prefer to stay anonymous, online support groups let you reach out without the fear of spotting familiar faces from your community.
Anyone with SMA can benefit from the convenience of virtual support, but for people in rural communities, online support is vital. Connecting from home bypasses several common barriers to participation, like mobility issues, time constraints, financial concerns, and a lack of reliable transportation. Online support groups are usually free and may be accessible at any time (particularly with discussion boards versus live meetings).
Social media appears to be an increasingly prominent source of support for teens with chronic diseases. One study showed that more than 97 percent of adolescents felt it was important to share their health condition with friends on social media. Over 94 percent of teens had sought out peers on Facebook with the same diagnosis. Parents should be mindful of their teen’s online habits, as not all aspects of social media are positive. However, when used the right way, social apps and support groups can fulfill the need for teens with SMA and other rare diseases to feel like they’re not alone.
SMA affects people at different stages of life. Here are some online and in-person resources to help you find the support you need.
If your child has SMA, you may be interested in online support focused around:
An organization called Parent to Parent matches parents of children with disabilities or complex medical needs. This free service connects you with a “support parent” who has experienced similar challenges and can be available to speak with you over the phone.
Easterseals has several resources for people with disabilities and their caregivers, including respite care and inclusive childcare programs. The organization Variety — the Children’s Charity provides services, equipment, and experiences to children with disabilities around the United States. Another organization, Abilities, has several resources for parents, including information about adaptive sports and large expos where you can meet other families.
If you’re looking for opportunities for your child to meet friends, the Muscular Dystrophy Association hosts a virtual summer camp (previously in person) for kids with SMA and other neuromuscular diseases. Parents can sign their children up to do fun activities and make meaningful connections with other kids who face similar challenges.
There’s also a family resources page on the Muscular Dystrophy Association website filled with:
Ask your child’s health care team or school social worker about additional programs and resources that may be available to help your family.
Teenagers and adults with SMA can benefit from online support services related to:
Cure SMA is a nonprofit organization that offers SMA conferences and coordinates SMA communities locally and nationally throughout the United States. Through Zoom, Cure SMA has:
Programs are designed for specific age groups, including children, teens, and adults.
You can search local Cure SMA chapters by state to find out about fundraising events, such as golf tournaments and galas. Meeting new friends in person and staying in touch through virtual events (or vice versa) is an excellent way to build your network and learn how others navigate barriers in their daily lives.
On mySMAteam, the social network for people with SMA, members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.
Do you have questions or tips about living with SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.