Using social media to connect with other Pompe disease families

Social media is right at our fingertips. Most adults, teenagers, and even preteens are equipped with cellphones or some other device that can access the internet. While the web can be used for many purposes, one of my favorites to date has been to browse social media for people who are having the same experiences as my family.

At the start of our journey with Pompe disease, six years ago when my son was born and diagnosed with the infantile-onset form via newborn screening, I used Instagram, Facebook, and similar sites to connect with others.

I also discovered support groups and became close with many families there. We all consider ourselves one big family because nobody truly knows and understands what it’s like to live and deal with Pompe unless it’s affected you or someone in your family.

What I never expected was for some of these support groups to grow as large as they have, and I’m sure their creators feel the same way!

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One big family

As I’m writing this column, the Facebook group Cure Pompe Disease has 3,300 members and is Facebook’s most popular group devoted to Pompe disease. Typically, people post on the page every day, asking a question or informing members of something new or exciting in the Pompe world.

Another great group I’ve found to be helpful is Moms of Pompe Kids, a private group that has a smaller following, with 503 current members. Don’t let the smaller number fool you, though; the moms in this group are there to help whenever you need them. A father had mentioned he might create a group for dads as well, but I’m not sure that’s happened yet.

I love the mom group because I feel we can ask a bit more personal questions. Some people with Pompe are well into adulthood now, which means they have their own social media accounts. And the children who are too young for social media will probably have it at some point or another.

The mom group allows us mothers to discuss personal topics without worrying about our children seeing them, now or in the future. As a parent, I’m open and honest with my son about most topics. However, I don’t want him to see the brutal, raw, and real emotions that I’ve experienced on this journey, because I don’t want him to feel as if he’s placed a burden on me.

Truth is, my son isn’t a burden, and neither is this disease. But caring for a child with a rare disease can be a huge adjustment to a lifestyle. We need an outlet to connect with mothers and others who’ve felt these feelings and recognize how to navigate them.

Have you ever looked out into the ocean and seen how big the waves are? Realizing how fast and fiercely they could sweep you off of your feet if you aren’t careful? That’s kind of how it feels to navigate this Pompe disease journey at first. You’re thrown all this information with no idea how to take it in or where to start. That’s where the people in support groups step in!

Many of us are years if not decades into the Pompe disease journey. While we aren’t professional counselors or therapists, sometimes it feels as if we are. No words have been more comforting to me than the ones coming from other mothers in my shoes. And I hope all of the long and meaningful discussions I’ve had with mothers who are newly navigating this journey have given them the same sense of relief and security that I felt when I was in their shoes.

Social media has lots of purposes, some of which are amazing. I don’t know how I would’ve come this far if it weren’t for joining these support groups and connecting with the folks that I’ve met along the way. If you stumble across this column and aren’t a part of these groups yet, please join us and feel free to reach out with any questions or concerns. Any of us would be more than happy to connect!

Note: Pompe Disease News 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 health 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. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.