Once I had to go to the hospital just for electricity to plug in my breathing machine because a thunderstorm knocked out my power.
All articles by Keyana Sullivan, Pompe Contributor
Pompe disease was discovered in the early 1930s when infants died months after birth from weak hearts.
The world is definitely stressful and I can lose my mind if I don’t have self-love and happiness.
As a young woman with Pompe disease, I look back at what I’ve been through and say I wouldn’t have overcome my challenges without my parents.
Pompe disease makes patients prone to respiratory infections, and it’s very easy to go from a minor cold to pneumonia.
As a Pompe disease patient, this has recently been happening to me and others, and it’s getting more ridiculous and confusing.
I’ve been told that I spend too much time on my phone. I won’t deny that, because I need it to help me with my daily life, to make things easier for me.
As strong as we seem, as strong as we are, we need the support of others like ourselves.
Diet should be a major focus for physicians, especially those treating Pompe and other rare diseases.
Pompe disease patients don’t share all the same symptoms, and because we don’t share the same symptoms, we don’t all require the same treatment.