Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with Pompe disease and that others have been in your shoes. Here’s a collection of our columnist’s words that she would like to share to help guide, inspire, and encourage you.

Finding Our Pompe Family, Thanks to the Odds

Columnist Keara Engle’s son, Cayden, was diagnosed with Pompe disease in 2018. Here, she writes about his diagnostic journey, and how they found a family in the online Pompe community.

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The Special Specialists That Help Manage My Son’s Health

Cayden receives care from multiple specialists. Here Keara describes how each doctor helps treat his Pompe disease. They all help to keep him alive and healthy, for which she is truly thankful.

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Self-care Is Essential for Special Needs Parents

Allowing others to help in her caregiving was a huge act of trust for Keara, but one that boosted her quality of life. She writes about how important it is for caregivers to accept help and practice self-care to avoid burnout.

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A Look Inside My Son’s Home Infusions

Keara shares what an at-home enzyme replacement infusion looks like for Cayden. While the procedure is lengthy and can be scary at first, she’s glad the opportunity is available for her son.

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