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An Open Letter to My Child(ren) Without Pompe Disease
I’d like to start by saying, I am so proud of you. Getting your sibling’s Pompe Disease diagnosis and living with all it entails was hard for all of us, and the way you navigate it makes me swell with pride. This experience entails a lot of hard feelings and you’ve shown so much resilience…
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A Simplified Explanation of Pompe Disease
Pompe Disease is far from a simple disease. It is complex, involves multiple body systems, and can present in varying ways. This makes it incredibly difficult to understand. People affected or parents of affected children devote much time and energy into understanding it better. A way to spread awareness for this is to tell and…
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The Ugly Side of Advocating
A disease which is not well understood by the majority has its disadvantages at each turn. It’s not realistic to expect that people who have never heard of this to understand all that it entails, and while I understand that, it’s still hard. This reality propels you into a position that requires grit, grind, and…
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Appreciation of the Pompe Community
Pompe Disease doesn’t discriminate. The variety of ages, locations, cultures, backgrounds, and disease severity is quite the range and only gets more diverse the more that it’s getting diagnosed. Among the sea of differences, one monumental thing is shared, and that is the diagnosis. Some have Pompe Disease, some have children and family with it,…
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Story Spotlight: Julie Garfield
In team events, there’s always a time when you think, “thank goodness that person is on my team.” That’s how I feel about a lovely woman named Julie. Her story and attitude towards Pompe is very inspiring and her efforts to spread hope are truly making waves in the community. This is her story. “I…
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Perspectives of The Pompe World 