Transcript of the message given by PSOD patient-advocate Juan “Dickoy” Magdaraog at the first Philippine Rare Disease Symposium hosted by the Department of Health and UP National Institutes of Health last February 22, 2017 at Century Park Hotel, Manila.
Good afternoon! My name is Juan and I’ve been suffering from Pompe’s disease for close to thirty years.
The symptoms first manifested when I was ten years old. From being a normal kid weakness progressed over time. From being able to walk, run, bike, swim and do most things kids can do, I slowly lost the ability to do them. I started having trouble walking and at the age of nineteen I started using a wheelchair part time. By my early twenties I was wheelchair bound full time.
Just before college I had the chance to go see a Pompe specialist. I was supposed to participate in a study. Fate had other plans. When we got to the hospital, they did some initial tests and discovered that my carbon dioxide levels were near cardiac arrest levels. They immediately hooked me up to a Bi-pap machine and transferred me to the ICU. I had a scary night but God placed the right people at the right time to help me.
After that I was placed on a high protein, low fat diet. That helped get me through the next few years. I was twenty eight when by luck I was able to apply for compassionate use of Myozyme. The FDA approval was still pending but they were allowed to give it to patients who were showing advanced symptoms. They picked several patients from all over the world. I was one of the fortunate ones.
Fast forward to the present, I’m months away from my fortieth birthday. Still young relatively speaking but a big milestone for someone they said would not live past the age of thirty.
I’m extremely grateful to continue to beat the odds. I can’t say I did this on my own. My story is a story of people coming together to give me the best chance in life. In turn it gave me a chance to be here in front of you today and in a small way make a positive impact in the rare disease community.
Family is key. They are my primary support group. The first people to be there for me and they will be the last ones to give up on me. I’m lucky that I was born into a good family who loved and cared for me. A family that never gave up on me and more importantly pushed me to live life as best as I could.
They made sure I was able to finish my degree and get the education I needed to get ahead in life. My muscles are weak but my brain isn’t. I’m able to work because of the education I received.
I’ve also been fortunate to have worked with great doctors, nurses and other healthcare specialists. While the first symptoms of Pompe disease came at the age of ten, I was only diagnosed formally at the age of sixteen. It took a trip to San Francisco to get diagnosed. It was a different story back when I was young. Now through the work of the Institute of Human Genetics at the NIH, we have better specialists here who can diagnose rare disease.
For more than ten years doctors from the Institute of Human Genetics looked after my health and oversaw the administration of Myozyme, an Enzyme Replacement Therapy that saved my life. I’m quite certain that I will not be here in front of you if I did not receive Myozyme when I did.
Dra. Sylvia Estrada is my primary care doctor. Under her guidance several fellows have helped me along the way and made sure I got my infusions done properly.
Who says that in today’s world that being in business only means the bottomline and profit? That if it’s not bringing in money it’s not worth doing. Sanofi Genzyme through their international charitable access program has been providing Myozyme for my Enzyme Replacement Therapy. It is through their generosity that I’m here speaking in front of you.
A couple of weeks ago, I was sitting in the hospital room waiting for my infusion to start I had the chance to think and reflect on the past years I’ve been receiving treatment. It seems like only yesterday when I began this improbable journey. A life that took me through a different path. While it’s a path I would not wish on another person because having a rare disease or any disease is something you don’t want other people to go through, I can say I am still thankful for the lessons it taught me and the opportunities it gave. It showed me a different perspective in life. It taught me humility and compassion.
I am a lucky man. A lot had to come together in order to make my life possible. I’ve been given a chance at life. In the more than ten years I’ve been on Enzyme Replacement Therapy I’ve done a lot of things. I’ve continued to work as a front-end web developer and thus a productive member of society. I’ve done advocacy work for rare diseases. I’ve met new people and some have become life long friends, I’ve experienced new things and even lived long enough to see my hair turn gray. I used to think that growing old was a bad thing until I grew older and realized that gray hair meant I was fortunate enough to have lived this long and accomplished a lot of things.
I’ve done a lot and continue to do more but one of the most important things I’m doing with my life is to be here in front of you advocating for patients with rare disease. I believe we all have a purpose in life and this is mine.
I’m here to inspire, motivate you to act and do your part to help people, especially children with rare diseases. My rare disease success story is just one, there are many more waiting to be written. The reality is no one succeeds alone. I did not get here on my own. I’m here because people came together to make my life possible. They believed that I deserve a chance at life.
Children like Pauline who suffers from Gaucher’s disease, the Parco brothers who all have Hunter syndrome, Ivan and Knowah who have Wiskott Aldrich Syndrome and Princess who suffers from Maple Syrup Urine Disorder, these children are still at the beginning of writing their stories and exploring their possibilities. They still have their whole lives ahead of them.
It is incumbent on us to help make their stories possible. If we work together, we can transform not only patients lives but their families as well. Rare disease doesn’t only affect patients, it also affects their families. A father who works in the morning then comes home to care for his sick child, a single mom who only has herself to rely on because her husband abandoned his family, these are just a few examples on how rare disease also affects the family.
We should not only be guided by economics but also a sense of what is right. That it makes perfect sense to use our resources and talents together to ensure that more people with rare diseases are given a chance at life.
I continue to beat the odds against Pompe disease not because of my own efforts. I am able to do this because of my will to live and fight but more importantly it’s because a lot of people came together to help me beat the odds. That has made all the difference.
No one is successful on his own. It’s when people come together that great things happen. You’re here today because in some way you’re connected to the rare disease community. There is no role too big or too small, no work too unimportant. We all have our parts to play to help transform the lives of people with rare diseases. Let’s all work together to make that happen.
In closing I’d like to leave you with these words from Theodore Roosevelt.
“Far and away the best prize that life has to offer is the chance to work hard at work worth doing.”
Originally posted at Juan Magdaraog’s Facebook Timeline
Juan Magdaraog “Dickoy” is a PSOD/rare disease patient-advocate. He was diagnosed with Pompe disease, a genetic disorder that causes the deterioration of the body’s muscular system. Like most rare disease patients, he received a different diagnosis prior to an accurate determination of his illness.
Dickoy was once told that most patients would only live until their 30th year. At present, Dickoy is an Industrial Design graduate and an accomplished 39-year old entrepreneur despite only being able to move his wrists. He is also a recipient of Myozyme enzyme replacement therapy through a multinational drug company’s International Charitable Access Program (ICAP).
Learn more about Dickoy’s story in this video: