I was 10 years old when my parents started noticing that I was tripping often. Little did they know that what seemed like a simple case of flat feet will be something much bigger.
After several visits to our family pediatrician, my case didn’t seem that simple. Tests were done and at that time technology here in the Philippines wasn’t that as advanced as the United States. With the limited tests that could be done here the doctors concluded that I had a case of Duchene “Muscular Dystrophy”:http://www.mdausa.org/disease/dmd.cfm. Something years later on would be found out to be untrue.
My family had a chance to go to San Francisco, California when I was 16 years old. My parents found a Muscular Dystrophy specialist in a children’s hospital in San Francisco. The visit to the doctor eventually gave us the right diagnosis. A muscle biopsy was done and after a few weeks the doctor came back to us with a definitive diagnosis. What I had was Pompe’s disease.
What’s Pompe’s disease? I can go on and tell you how I understand the disease but that wouldn’t be fair. Instead you can read about it at these web sites, “the Pompe Community web site sponsored by Genzyme”:http://www.pompe.com/, “the AMDA or Acid Maltase Deficiency Association”:http://www.amda-pompe.org/ (another name for Pompe’s disease) and the “International Pompe Association”:http://www.worldpompe.org/. All these web sites should give you a better understanding of what Pompe’s disease.
18 years after first noticing that something was wrong with me, the fight continues. I started this blog to chronicle the continued fight against Pompe’s disease. Not just my personal fight but also the fight of the whole Pompe community against these dreadful disease. There might be only a few thousand in the world diagnosed with Pompe’s disease but that doesn’t mean that we are less important. that the value of our lives is less just because we’re in the minority. Everyone in this world has the right to life. The best possible life he/she can have. We’re only in this world once, we deserve to live our life to the fullest.
There are developments for treating Pompe’s disease. There’s hope in the horizon, something to look forward to. Journey along with me as I fight Pompe’s disease. Whether I win this battle or not, the destination is not as important as the journey.
As you walk with me through my journey, I’d like to share with you as well some of my personal insights in fighting with the disease. You may also get the chance to meet other great people who either are suffering with Pompe’s, helping find a treatment, or helping a patient go through life with Pompe. These are great people and trust me you won’t regret meeting them.
I hope to see you in the days to come. If you have any questions or just want to share your thoughts, leave a comment and I promise to try and get back to you as soon as I can.
Fight Pompe!