My name is Juan Magdaraog. I suffer from the juvenille/adult onset of Pompe Disease. Pompe disease first manifested itself when I was around 10 years old. At that time no one in the Philippines knew what it was. In fact I was misdiagnosed till I was about 15 years old. The first diagnosis was Muscular Dystrophy. It was only when I had a chance to go and see a Muscular Dystrophy specialist in San Francisco that a proper diagnosis was made. The verdict, it was Pompe Disease.
I’ve been dealing with Pompe Disease for quite a long time now. More than 20 years as of this writing. It’s been a tough life. Filled with a lot of challenges and difficulty. Despite that I’ve managed to do a lot of things.
With the love and support of my family, I’ve managed to finish school. In 1999 I graduated with a degree in Industrial Design from “DLSU-College of Saint Benilde”:http://www.dls-csb.edu.ph. This is something I’m extremely proud of.
I’ve worked most of my adult life. I currently work for Vinyl Interactive through Wideout Technology Services Inc., a local outsourcing company. I do front end web development for Vinyl Interactive.
I was the Creative Director for a small start-up called “Sparkplug Studios”:http://www.sparkplug-studios.com. I started this company a few years ago together with my brother and some other friends. Prior to that I spent some time working at other companies, “Burnlounge”:http://www.burnlounge.com and one of iAyala’s start-ups.
Work has always been a big part of my life. Not so much because it gives me monetary rewards but moreso for the sense of dignity it brings. I can honestly look at myself in the mirror and say I’m worth something. I contribute to this world we live.
The past few years have been amazing. I’m still on Myozyme, an enzyme replacement therapy that’s keeping the disease progression at a minimum. I know I should focus on health more but it’s been hard to juggle maintaining my health, working, trying to do some good and simply having a life.
Apart from my full time day job, I also do some writing on the side. I wrote for a local mobile technology magazine called Mobile Philippines, a web site called EveryJoe.com that is owned by b5media inc. as well as some other freelance writing gigs.
One of the most important things I’m doing with my life though is being a part of the “Philippine Society for Orphan Disorders”:http://www.psod.org.ph as a patient advocate. It’s a non-profit organization that aims to help people, especially children in the Philippines who suffer from rare disorders. I also am trying to set up a new project called “The Breathe Initiative”:http://www.breatheinitiative.org . This project aims to help people who don’t have access to breathing equipment such as ventilators, bipaps and cpap machines as well as other respiratory related things.
I love several things in this world with a passion. “Apple Computers”:http://www.apple.com, “Ferrari”:http://www.ferrari.com and “Panerai”:http://www.panerai.com . Among the three it’s only the fruit that I can afford to buy. The other two I’d just have to dream about them. Still life is also about having dreams.
I love my family. I thank God for them each and every day. They are the reason I am here. The reason I’m able to do what I have done thus far. My life is dedicated to them.
I’m an easy going, often times friendly and approachable guy. I’m actually very nice once you get to know me. I get a long with people easily. Chances are we’ll get along just fine.
To know more about me then what’s here, I guess you’ll just have to read the entries here in the web site.
You have a great day now, Ya’ hear!