About Juan

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!

Thank God I am Blessed

I had the good fortune of being invited, together with my friend Carlo to talk during a workshop entitled “Design Matters”. It was held at the DLS-CSB School of Design and Arts. What made it special was the fact that I came from the School of Design and Arts and it was nice to be invited back to speak.

However much as I went there to impart some knowledge to the students, I also a recipient of a simple life lesson that we people often overlook and take for granted.

Before our talk, I had the chance to see a friend that I have not seen in a long time. I saw Robert while waiting for the sessions to begin. We exchanged pleasantries and I mentioned to him that I saw his pictures from his recent trip to Europe. I told him that I admired his pictures and told him how lucky he was to be able to do that.

His answer surprised me and struck me. It struck me because of its simplicity and how he said it. Robert said, yes, I am blessed and I am really thankful for it.

Normally when you complement people about their blessings whether it’s a new pair of shoes, a nice watch or a fancy car, they would often reply with a phrase that will downplay the blessing. People will, “no, it’s not nothing” or something to that effect. People often deflect or downplay their blessings.

Robert on the other hand said it simply. He affirmed his blessings and was thankful for it. He said when people ask me about the things he does, he would just reply that yes, he is blessed and he is very thankful. Not a lot of people are able to experience his blessings. That’s not something to look down upon.

I realize now that when we have blessings, we shouldn’t try to brush it aside. When people compliment us we should just simply thank their compliments and say that we are grateful that we are blessed by God. There’s nothing wrong about being blessed. In fact giving thanks to God for the blessings is good. It tells God that in good times we have not forgotten him. It tells him that we are grateful that he has chosen us as a recipient of his good graces.

Robert, thanks for reminding me that when people tell me I am blessed I should just acknowledge the kind words and thank God for the life, the family, the experiences he has blessed me with.

Thank you God for the blessings. I am truly lucky that you have looked favorably upon me and my family. I wish that the person reading this is blessed as well.

Responsible Reproductive Health

The current hot topic today is the RH bill. While I don’t agree with the bill 100% and there are parts of it that I think should be changed, as a whole I think it is time we put forth a law that will aide and protect our right to choose.

Now there are arguments against the bill and here are just some of them:

1. Our country is not overpopulated – We have 90 million people living in our country. True, our population may not be as dense as Singapore, Macau, etc but those are developed countries. Ours is not. They have an economy that can support their population. But even those countries have resorted to some sort of population control. The Singaporean government saw the rapid population rise as a threat to living standards. Population is a resource it has to be managed. We need to be able to not just support our population but provide an environment wherein it can thrive and thrive well.

Someone said that God’s gift to us is our population and that our biggest earners are the OFWs who go abroad and bring back dollars. Our OFWs are our modern day heroes but I would rather we have a country wherein our people are not forced to leave in order to support their families. OFWs leave our country precisely because they can’t find adequate jobs here that will support their needs. Do you really think that most of them would like to go abroad and leave their families behind? No! I would bet that most of them would rather stay here if they can find work that pays them well. A lot of families have been broken because of the distance that separates them. Spouses forced to find comfort with another person out of loneliness.

2. Having a lot of children is not bad – True! Having several children is good. In fact I think you should have as much children as you can comfortably support financially, emotionally as well as spiritually.

From my own personal experience, most of the people I know who are generally middle class, the average number of children they have is around 2 to 4. I barely know anyone from my generation who has more than 4 kids. Why? Because they know that their resources can only support as much. They have that understanding. They know that having kids does not only mean putting food on the table but also providing quality education, a good home, adequate healthcare, clothes on their back, etc.

Generally educated people have this understanding. Sadly our citizens who live below the poverty line are not blessed to have been educated this way. That’s not their fault. It was their circumstances that led to that. This is the segment of society that you see a lot of families with more kids. Why? Because they don’t know better. Also because they’ve been led to believe that having more kids increases their chances to get out of poverty because they will eventually have more family members that can work to help them out of poverty. That’s wrong. A lot of these children will be uneducated, left to fend for themselves on the streets.

So while it’s true having a lot of children is not bad. It should be based on how many children can you comfortably support.

3. RH Bill is promoting abortion – This is simply not true. In fact let me quote a section of the RH bill

“While nothing in this Act changes the law on abortion, as abortion remains a crime and is punishable, the government shall ensure that women seeking care for post-abortion complications shall be treated and counseled in a humane, non-judgmental and compassionate manner.”

The RH bill does not change the fact that abortion is illegal and that it remains a crime. However it states that if someone who had an abortion needs medical treatment post-abortion, that person should be given adequate healthcare.

In the same manner that when a person is shot while committing a crime, it does not mean that he should not be brought to the hospital and given proper medical treatment. He/she still deserves to be helped.

Some people also say that contraceptives are tantamount to abortion. This is an argument that I have trouble understanding. Is using a condom same as abortion? I don’t think so. A condom is a preventive device. How can you abort something that has not happened?

If this is the case then we can argue that natural family planning is also tantamount to abortion. Why? Because you’re choosing the days to have sex, with every intention not to conceive. So you’re still actively preventing the creation of life.

4. Sex Education in school is bad – This is one argument that honestly makes me shake my head. Some people even go as far as saying that sex education in classroom is tantamount to bringing pornography to kids.

Look when people buy stuff they get a users manual with it. In fact it is recommended that you go through the users manual and familiarize yourself with how that thing works. It’s the same with our bodies.

I think there comes a time wherein children should be taught about their bodies and how things work. This should be done in and educational manner with materials based on science and fact. Not in beliefs.

People giggle and laugh when you mention penis and vagina. Why? Because they were given the impression that saying these words are bad. When in fact these are the scientific terms used to describe a man and a woman’s reproductive organ. We were taught as kids that saying these words are taboo. We were made ignorant because of outdated views.

If you taught kids the proper parts and functions of their bodies this would lead to less experimentation and less questions and curiosity.

We can’t be a nation based on religion. I say this because I know that our country or world for that matter is a very diverse world. We have different beliefs and different ideas of God and spirituality. We cannot let religion define policies that will govern a nation that is so diverse. This is a recipe for disaster.

Laws and policies crafted and enacted by the government should be gender, race, and religion neutral. We can’t have laws or not have laws for that matter that will be biased or prejudicial to any of these factors. We should have laws that put the welfare of the entire country first.

Morals and values should always be taken into consideration and there are common values and morals that are intrinsic to all people regardless of race and religion. You shall not kill, steal, cheat, etc are common to all people regardless of religion. Those common values should be upheld and enforced.

From my own personal understanding, the current RH bill in no way promotes abortion or degrades the sanctity of life. In fact I feel that as a whole it helps promote a better quality of life by providing resources necessary in order to educate people about reproductive health.

I am a Catholic. I believe in God. I was also taught that God said we should be good stewards of the resources that he has blessed us with. People are also a resource and we should be good stewards of our population. We should know that at our current situation we couldn’t support a population as huge as ours. Therefore we should manage it.