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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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Facing the Financial Side of Pompe Disease
A rare disease diagnosis changes so much about life. Many families will describe feeling as if their life was flipped upside down and changed forever. Aside from the fear of the health outcomes of the diagnosis itself, the other major stressor is the financial aspect of this diagnosis. It is inconceivably expensive to have a…
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A Journey to Home Infusions for Pompe Disease
One of the bright spots in a Pompe Disease diagnosis is that there is treatment. This is a weekly/biweekly infusion lasting an average of 6 hours, that replaces some of the enzyme that patients do not make enough of. This slows the disease progression down, but is not a cure. For some families, being at…
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Perspectives of The Pompe World 