Several years ago, Marsha Zimmerman thoughtfully created a Respiratory Care Information Card for Pompe patients, available free of charge through the AMDA. I tucked one into my purse and carried it for years, feeling reassured that, on the off chance I ever needed emergency respiratory care, important information would be readily available.

More recently, the card was updated with concise respiratory care guidance and a QR code that links to more detailed information about the unique medical needs of individuals with neuromuscular diseases, including the safe use of oxygen.

When I read the announcement about the updated Medical Alert Card in the AMDA newsletter, I immediately requested several copies: one for my purse, one for the File of Life on my refrigerator, and one for my husband.

The thing about unexpected medical emergencies is that you rarely see them coming.

A few weeks ago, I experienced a severe episode of atrial fibrillation. The intensity of the episode and the dramatic swings in my heart rhythm required a trip to the emergency room. As the medical team quickly began evaluations and testing, they immediately wanted to place me on oxygen.

At that moment, with my heart pounding in my chest, I’m not sure I could have clearly advocated for myself or effectively explained the potential risks associated with oxygen therapy for someone with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More.

Instead, I simply reached into my purse, handed the Respiratory Care Information Card to the staff, and said, “Please read this.”

What a relief.

In a fast-paced emergency room setting, that small card carried far more authority than anything I could have tried to explain myself. The clear warning regarding oxygen use immediately communicated critical information and helped ensure that my care team understood the special considerations associated with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More.

If you do not already have an AMDA Medical Alert Card, I strongly encourage you to request several copies. They may protect you from well-intentioned but inappropriate respiratory care during a medical emergency.

After sharing this experience with the nurses at my infusionA method of delivering medication through an IV. More center, I was surprised to learn that they were unaware that Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More requires special consideration when oxygen is administered. Because of that conversation, I’ll be placing an extra card in my medical chart as well.

Thank you to the AMDA for always looking out for the Pompe community and providing practical tools that truly make a difference when it matters most.

If you have a friend with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More who lives outside the United States, simply share photos of the front and back of the card. The information can be stored on their phone, and the QR code should work just fine.

This card was my advocate when I needed one most. I encourage every person living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More to request a Medical Alert Card and carry it with them. You never know when an emergency might happen, but having this information readily available can provide both protection and peace of mind. 

-Rebecca B.