Fight Pompe is my way of contributing to the Pompe community. I started it out as a blog, which was residing at “Blogger”:http://www.blogger.com for a time. I eventually wanted a fully blown web site so I decided to buy the domain and host it at “GoDaddy”:http://www.godaddy.com.
I wanted to create awareness for Pompe Disease. It is a rare disease affecting some 10,000 people in the world (registered cases). There might be more but as of now that is what’s known. Being rare, not too many people are aware of the devastating effects of Pompe not only to the patient but to the family as well.
Since I work with technology, web technology to be exact, I knew that starting the Fight Pompe site is the best way I can help create awareness for Pompe Disease.
I want to share my life with you, how Pompe has affected my life, how I deal with it, and how it has made me who I am today. Despite the devastating effects of Pompe, I have managed to make lemonade out of lemons so to speak. I have learned a lot from my experience and now I want to share it with you. In hopes that it may help you in anyway. Pompe patient or not. I believe that the lessons I’ve learned are universal and can be applied to everyone’s life.
I hope that you visit Fight Pompe often. Ask your friends to come too! The more people know about Pompe, the more people will understand. Hopefully this translates into something good.