I was diagnosed with Pompe Disease in January 2010, after having been misdiagnosed with Inflammatory Myopathy for years. The blog begun as a way to keep my friends and family informed of my medical “adventures” along with providing me a creative outlet.It has evolved into a place where others who have been touched by Pompe can go to seek information and reassurance they are not alone in this fight, and to raise awareness about this condition. And it is a fight – I am fighting Pompe, I am not suffering from it.
When I was first diagnosed, I found there was very little information out there for patients. It is my hope that this blog will provide information and hope for those with Pompe and their families. While the main focus of this blog will be about Pompe, others with mobility issues may benefit from my entries on accessible travel.
You can follow me on Twitter @MElizabethGr.