I have a few medical devices that I use daily and rely on for managing my Pompe disease.
According to my medical insurance, there is a possibility that one day I will wake up and my Pompe disease will be gone.
In 2015, I was diagnosed with late-onset Pompe disease, and ever since I’ve been learning how to respond to my body’s messaging.
I have always used my social media channels to reach out to other patients who also have Pompe disease.
Neuromyelitis optica spectrum disorder (NMOSD) columnist Teaira Daniels reflects on the loss of her daughter, Amariyah, who passed away from Pompe disease.
You can be diagnosed with late-onset Pompe disease as early as 12 years old. I was diagnosed at 13, just as I was starting middle school.
There are more people out there affected by a rare disease than many would think.
Being active and maintaining your strength is the most important priority when you have Pompe disease.
Rare disease columnist Bruce Campbell shares his journey from Guillain-Barré syndrome to Pompe disease.