My name is Sue Davey. I live in Leeds, England. I was diagnosed back in 2008 and immediately began ert with myozyme. Unfortunately my pompe disease continued to progress quite rapidly. I made the decision to stop treatment as it wasn't helping at all. Infact it made me feel worse for a few days after having it. I did try ert again after a year without it but again I had the same result. I've been continuing without treatment for around 5 years now. The disease progression slowed down on its own & I have been fairly stable for a around 3 years. My hopes for the future are that new treatments will be found that work for everyone. Treatments that reverse the symptoms of pompe disease. My biggest hope is of course that a cure will be found. I would love to be able to go for a walk again. Getting out in my wheelchair is ok but I really want to be able to go for a walk. I miss that so much.
Better understanding of pompe disease and a cure is my biggest hope for the pompe community.
Sue Davey
Leeds,
England
