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Bravery with a Bitter Taste
In our society as a whole, being brave is celebrated. Bravery is a thing which makes us pour our thanks, swell with pride, and ignite with inspiration. It’s in the feel-good stories and the news spotlights. Bravery is pulling from deep within and boldly doing a hard thing, and this is 100% a characteristic that…
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Story Spotlight: Haley Hayes-Defying the Odds and Bringing Hope
Haley Hayes is a prominent and well-loved member of the Pompe Community. Her attitude, personality, and influence grow inspiration in everyone she encounters-bringing hope to many, like myself. When delivered this diagnosis for my newborn 6 years ago, none of the scholarly articles could show me what life could look like with Pompe Disease and…
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Home VS Clinic Infusions for ERT? The Pros and Cons from Seasoned Pompe Families
For many with Pompe Disease, Enzyme Replacement Therapy is a part of their routine. For some, it can be weekly, and for others, it can be bi-weekly. This is a life changing drug that replaces some of a deficient enzyme to slow Pompe disease progression. It’s an intravenous infusion that it weight based, and infuses…
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Navigating Losing Faith in Your Providers
It is a vulnerable thing to know that as a medically complex person, or parent of one, our healthcare providers are our lifeline. We lay our hearts in their hands and humbly ask them to help us. Many aspects of life depends on their knowledge and judgement, so finding one who we trust is irrefutably…
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How Can I Contribute to Advancements with Pompe Disease?
The rare disease community is vastly diverse. So many of our members have gifts that work to improve this journey in various ways. Some use their story and voice to provoke change with legislators, and some educate and spread awareness about the disease. Some advocate for accessibility and resources, and some of us network to…
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Perspectives of The Pompe World 