Pompe Disease News

Pompe Disease News Your source for pompe disease news, support, & real stories from the community. Let’s raise pompe awareness together!🎗️

Newborn screening for lysosomal storage disorders, like Pompe, can spark parent anxiety, which may linger for those whos...
11/06/2025

Newborn screening for lysosomal storage disorders, like Pompe, can spark parent anxiety, which may linger for those whose children are carriers. https://buff.ly/Qb6hSvl

Want more community updates and caregiver resources delivered right to your inbox? https://bit.ly/3WBp4AeNovember is Car...
11/06/2025

Want more community updates and caregiver resources delivered right to your inbox? https://bit.ly/3WBp4Ae

November is Caregivers Month — a time to honor the caregivers who make every day possible for those living with Pompe disease.

From managing complex care routines to offering constant love and advocacy, your dedication shines bright. 🌟

Stay connected and informed — sign up for the Pompe Disease News newsletter for more community stories and resources with the link above.

💬Share your story to help inspire others in your community! https://bit.ly/41nNGPEWe are looking for voices in the Pompe...
11/05/2025

💬Share your story to help inspire others in your community! https://bit.ly/41nNGPE

We are looking for voices in the Pompe community; whether you are a patient, caregiver, or healthcare worker, we want you to contribute to our Guest Voice series. Write a 400-800 word essay about something that matters to you and get published on Pompe Disease News.

Driving with Late-Onset Pompe Disease? https://bit.ly/3LiZddNIt might still be an option—but not without taking safety i...
11/04/2025

Driving with Late-Onset Pompe Disease? https://bit.ly/3LiZddN

It might still be an option—but not without taking safety into account. Because LOPD affects muscle strength, stamina and breathing, even everyday driving tasks can present new challenges.

Read the full article to learn how to assess your driving ability, what warning signs to watch for, and tools or adaptations that can help you stay mobile and safe.

💭 Did you know there’s more than one type of Pompe disease? https://bit.ly/44szJ3EFrom classic infantile-onset to late-o...
11/03/2025

💭 Did you know there’s more than one type of Pompe disease? https://bit.ly/44szJ3E

From classic infantile-onset to late-onset forms, each type affects the body in different ways and can show up at different stages of life. Understanding the differences is key to better care, early diagnosis, and stronger advocacy.

🧬 Whether you're newly diagnosed, caring for someone, or just want to learn more, we've got you covered with a breakdown that’s clear, supportive, and easy to understand.

When people think enzyme treatments are a quick fix 😅
10/31/2025

When people think enzyme treatments are a quick fix 😅

💡 Managing Late-Onset Pompe Disease (LOPD) means surrounding yourself with the right support. https://bit.ly/47m66CuThis...
10/31/2025

💡 Managing Late-Onset Pompe Disease (LOPD) means surrounding yourself with the right support. https://bit.ly/47m66Cu

This guide walks you through how to find specialists, build trust with your care team, and understand the benefits of coordinated, whole-person care.

Noninvasive quantitative muscle ultrasound, or QMUS, can detect progressive muscle disease in people with IOPD on ERT. h...
10/30/2025

Noninvasive quantitative muscle ultrasound, or QMUS, can detect progressive muscle disease in people with IOPD on ERT. https://buff.ly/x4pg794

💭 What is it like living with Pompe disease? https://bit.ly/3Tqn6B4From muscle weakness to breathing issues, the symptom...
10/29/2025

💭 What is it like living with Pompe disease? https://bit.ly/3Tqn6B4

From muscle weakness to breathing issues, the symptoms of Pompe disease can vary a lot—and often go unnoticed for too long. 💨💪 Knowing what to look for is the first step toward getting answers and support.

💙 We break down the signs clearly, so whether you're newly diagnosed, a caregiver, or just learning—you’re not alone, and you deserve to feel informed.

Tap the link in bio to read the full article and learn how to recognize the symptoms of Pompe. 🧠👇
Knowledge is power—and we’re here to walk with you.

💪 Managing Pompe disease isn’t just about medical treatments—supportive therapies play a crucial role too. https://bit.l...
10/28/2025

💪 Managing Pompe disease isn’t just about medical treatments—supportive therapies play a crucial role too. https://bit.ly/4ow0vR5

From keeping muscles moving to improving communication, supporting breathing, and adapting daily life—these approaches together help people live with more strength, confidence, and comfort.

Always work with your healthcare team to tailor these therapies to your individual needs. Read the article above to learn more.

Sometimes the bravest move is letting others in. https://bit.ly/4mVikrSKeara learned that asking for help doesn’t mean y...
10/27/2025

Sometimes the bravest move is letting others in. https://bit.ly/4mVikrS

Keara learned that asking for help doesn’t mean you’re weak—it means you care for everyone involved, including yourself. 🩵

Living with an invisible illness means fighting battles no one else sees. Your journey matters, and your courage inspire...
10/23/2025

Living with an invisible illness means fighting battles no one else sees. Your journey matters, and your courage inspires us all. https://bit.ly/43oyPp4

Not all pain shows on the outside. Be patient, be kind, and remember—it’s okay not to be okay sometimes. Invisible illnesses test our resilience daily. Together, we can create a world where support and empathy are always within reach.

You’re seen. You’re heard. Your experience is valid. Let’s normalize conversations about invisible illness and break the silence.

Every day is a step forward. Celebrate the small victories—your strength makes all the difference.
The journey isn’t always visible, but the courage it takes shines bright. Share your story and inspire others.

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