23/01/2026
A very important post from our friends at Acid Maltase Deficiency Association - AMDA (USA).
Anxiety with Pompe can be tough. Reach out for support if you need.
Anxiety affects everyone. But how it is experienced and managed can look very different for someone living with Pompe disease.
For many in the Pompe community, anxiety is closely tied to the body. Changes in breathing, fatigue, muscle weakness, medical appointments, and long-term uncertainty can all contribute. Managing anxiety often means choosing tools that respect physical limits while still offering relief.
Some anxiety supports that many people with Pompe find helpful include:
• Breathing awareness, focused on slow, gentle breaths without forcing or breath holding
• Pacing and planned rest, especially when physical fatigue increases anxiety
• Predictability, such as preparing for appointments or routines ahead of time
• Gentle movement, when appropriate and guided by medical advice
• Stress balls or hand-held grounding tools, which can help release nervous energy and provide sensory focus without physical strain
• Writing or mental check-ins to help process worries that often go unspoken
• Connection, through trusted people or shared experiences within the Pompe community
Pompe disease is rare. Support shouldn’t be.
We are here to help by offering education, resources, and connection for individuals and families navigating both the physical and emotional sides of Pompe disease.
If anxiety is something you are dealing with, you can always reach out to us through our website or on social media. We are here to listen and help.
