Finding My Tribe Made a World of Difference After My Diagnosis
Online support groups prove other people with Pompe disease can help
Things seemed to be happening so fast as 2018 was ending. But it would go down in my books as the worst year of my life.
Seven months earlier, back in April, we lost our oldest son, Adam, to a brain tumor. He was only 22 years old and full of so much life and energy. My heart was aching, and the grieving hadn’t stopped.
Then I had my six months of serious symptoms that seemed to get worse with each passing month. My mental health and diagnostic journey were taking a toll on me personally. I didn’t want to hear I was diagnosed with a rare disease. I felt like my life was falling apart; I had lost my son, and now I was losing myself.
I had a lot of time to reflect on the year between Thanksgiving and Christmas, and things were looking down. There is no cure for Pompe disease, and at the time there was only Lumizyme (alglucosidase alfa) to slow the disease progression. I’d decided to participate in a clinical trial, which I felt was the best possible choice at that time. I felt like I was going to be a guinea pig and was scared of the unknown.
I decided to see what kind of information and resources I could find about late-onset Pompe disease. At the time I wasn’t very active on social media, but I did have a Facebook page. I searched for Pompe there and came across the group Cure Pompe Disease. I joined it and other Facebook support groups: Pompe Strong, Pompe Friends, Hope Travels-Pompe Awareness, and another Pompe Friends group for patients 18 and older.
As I’m not much of a reader, I began to look over some of the posts and comments in the Cure Pompe Disease group. My eyes opened wide as I read about other people’s diagnosis of Pompe. They were having symptoms and experiences that I was having! It was a breath of fresh air. It became apparent to me that I’d found my tribe. I wanted to learn more about these people, their experiences, and how they live with Pompe.
Pompe disease has no boundaries. It affects all races and all generations, all over the world. I was now a part of something bigger. The Pompe family was calling me, and I wanted to share my journey with others as well. I felt like I belonged, and knowing other people were experiencing the same type of physical weakness was going to make my journey more positive. I learned that together, we’re stronger.
My wife says I got Pompe so that I could make more friends. She may have been right. I was so happy and excited to start making connections with people from Florida, Michigan, Montana, New York, Texas, and even a few in California, where I live, as well as some from around the world.
My journey with Pompe was starting, and I wasn’t alone. It was important for me to know that others were going through what I was going through, and that we could be there for one another. I planned to support, encourage, and lift up others, looking at this new life in a more positive light, ready to share my story and make as many friends as possible along the way. This part of the road to Pompe was going to be a fun and wild ride.
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.
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