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A Full-hearted Thank You after The Pompe Family Meet Up 2024
I’ve seen some amazing things grow in less than ideal conditions. One of those things is the community that forms under unfortunate circumstance. I’ve expressed my gratitude toward having this community for nearly 5 years now and that gratitude only continues to grow each year. Something about Pompe Disease just feels less scary when you…
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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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Perspectives of The Pompe World 