Changing Aides

One thing I really hate about having an advanced case of Pompe Disease is my reliance on other people for daily living. One thing I hate more than that is having to change aides.

In about a week or so I’ll be changing aides. Mike who’s been with me for almost two years will be going to the province. I’m not sure if he’ll be there permanently. He said he has plans on coming back but as with all things in life, nothing is certain except death and taxes.

I’m used to Mike already and he’s done a good job so it really sucks to have to change aides. It’s something he needs to do. I don’t take it against him, in fact I’m grateful for the 2 years of service. I wish him well on his journey. I’d be glad to have him back but that’s something that the only time can tell.

For the time being, it seems that his brother will be the one to replace him. Although that is still up in the air due to certain factors. I hope I can sort this out soon.

Fight Pompe Featured In 2 Web Sites

It’s been a good past few weeks for Fight Pompe. This blog got featured in two web sites recently.

The first one is a “b5media”: blog called “Genetics and Health”: written by “Dr. Hsien-Hsien Lei”: Dr. Lei made Fight Pompe a featured blog of the week. Please go visit Genetics and Health. It’s a good resource written by a knowlegeble author.

The second site that feature Fight Pompe is “The PharmVoice”: also written by a “b5media” blogger “Gloria Gamat”: It’s a site that discusses Pharmaceutical industry related news and information. Please go visit this site as well as I’m sure you’ll find it interesting.

Thanks to these two sites for helping spread the word.

The After Mac


A few weeks ago I got a message from a friend, “Jayvee”: who also happens to be a blogger for “b5media”: He asked me if I was interested in helping him out with one of his blogs called “The After Mac”:

I’ve slowly started my “writing career” last year. If you can call it that. Starting with articles on a local magazine “MPH”: Writing is something that I’m now starting to like. I’ve written a few articles here and there the past few years but nothing regular up till the magazine and now the blogs.

I’m really happy to be onboard with “The After Mac”: It combines two things that I like, no love. Apple Computers and writing. So please, please for the love of God please vist the blog.

6th Time’s A Charm

Well… Not quite…. What I thought was going to be another uneventful infusion turned out a bit differently.

It started out the night before… Just before checking in the hospital I developed a mild cough. I usually have irritations that result in coughing. A few hours after it developed to one of the worst coughing spells I’ve had ever.

By 11 p.m. I couldn’t breathe anymore. My right lung was filled by fluid at that time. I couldn’t expell it. The resident doctor on duty was called by the nurses. She came into the room and decided to use the suction machine to take out the Phlegm. Long story short.. it took a few hours, several attempts at suctioning, my parents driving all the way back to the hospital and a lot of physical effort, but we finally had it under control by around 1 a.m.

It was only at that time that I was able to have dinner.

The next day the doctors were debating whether or not I should go on with the infusion. I had to get a blood test, x-ray and an ECG done to see if I could go on with the infusion.

After a few hours of debate and consoltations the doctors decided to go ahead with the infusion. That and because I told them I wouldn’t leave the hospital without the infusion…. Ha!

One thing that I failed to realize that in hindsight I know didn’t help was the fact that during breakfast I drank coffee. I was feeling cold and decided to drink coffee to warm myself.

The coffee, cough medicines, the anxiety, lack of sleep and the enzyme all added to my having a high heart rate. So much so that the doctors decided to stop the infusion.

They infected anti-allergy medicine as a pre-caution. I felt weird for awhile. Numb and drowsy. I slept it off for a couple of hours. I woke up feeling better.

The doctors decided to continue with the infusion. Everything went well after. We finished at around 9 p.m. later than what we anticipated. But as the saying goes, “better late than never”.

I had to stay an extra day at the hospital as precaution. By Wednesday morning I was feeling well and was able to go home.

I don’t know if it’s by sheer coincidence or what, but before the start of the infusion, I took of my cross pendant because I had an X-ray done. It went hay-wire that time. When we took the break from the infusion, I realized that I wasn’t wearing it. I put it back on and everything after that went well…. I choose not to see it as a coincidence but simply a reminder that I need God’s help to get through this.

Well, I’ve had enough excitement and hope that the next infusions go without incident.

Fight Pompe!

Thank You

Ever since I started the fight against Pompe, a lot of people have been there to show their support. Of course it doesn’t have to be said that my family was there for me. My immediate family as well as my extended family.

My family knows I’ll forever be grateful to them. I’d like to take this chance though to thank some other people. Friends who’ve gone out of their way to help. In fact I would not have thought that some of these people would care so much. Not because I didn’t think they are caring people but simply because we aren’t that close. That being said, some people are just kind and generous that you don’t have to be that close for them to come to your aid. I thank God for these people.

I’d like to start by thanking fellow patients that have been there to support each other through this battle. Maryze and Tiffany two women I’ve known for some time, albeit only through email and chat. Still I feel really close to them having shared similar experiences. They are pillars in the fight against Pompe. These two have fought hard so other patients may have a better chance in beating this disease.

Recently I’ve got to know other patients a bit better through GSDnet and through this blog. J.R. and Joe are just two of those patients. We’ve exchanged emails and words of encouragement. Thanks guys.

A special thanks goes to Kevin. He was my former boss albeit for a short time. Even though we didn’t get a chance to get to know each other well enough in person, we kept in touch via email and instant messaging long after we parted ways professionally. Upon hearing the start of my treatment, he said he wanted to help. He shared in my belief that I should start putting health first and have work take a back seat. Rallying his friends and family, Kevin has now started a way of helping me out. Special thanks also goes out to Kevin’s family and friends. Kathryn, Art, Alex, Kim, DT and Connie are just some of these. God bless you guys.

It doesn’t have to be said that thanks goes to the wonderful doctors that I have. Drs. Estrada, Alcausin, Padilla, Silao, Gotiongko, Dr. Jorge are the fine team of doctors that care for me. They play a big part in keeping me healthy and alive.

Thanks to the people at Genzyme. Dra. Jimenez, Patrick, Jamie, Mark, Julie, MaryBeth, and the countless other people who work tirelessly to help create a treatment for Pompe.

These are just some of the people who make my world better. There are others to thank however they skip my mind right now. Charge that to my mental lapse due to it being 1 a.m. I will thank them next time.

Words can’t express the gratitude I feel. I am comforted with the thought that in this world of ours wherein much bad things have happened lately, there are people who still make this world a great place to live in. Silently they work their miracles in other people’s lives. Not wanting any recognition in return. Just the simple satisfaction that they’ve made a difference in someone’s life.

Fight Pompe!

Get Well Soon Mang Bert

We didn’t get much sleep last night. Our long time family driver, Mang Bert got sick. He had a severe case of hypoglycemia, brought about by diabetes.

It came as a surprise because it was the first time that it happened. Early during the day he already complained that he was feeling dizzy. He didn’t work that day and spent it resting. His blood pressure was high already. He was given medicine to help bring it down and for awhile it worked.

He was feeling better already during the day. Apparently it was just temporary.

While sleeping that night he suddenly had a seizure. Luckily one of my aides heard him moaning and rushed to where he was sleeping. He could see that he was already stiff and his jaw was locked. He called for help and woke us all up.

We called for an ambulance but being the state of our healthcare system that it is, the ambulance took 20 mins to get here.

Mang Bert was brought to the emergency room at a nearby hospital. He stayed there till morning. The doctors gave him an injection of glucose and that helped a lot. He was allowed to go home several hours after that.

He will need to see a doctor to assess his health again.

In our country there are trade-offs. Luckily labor is cheap here. Mang Bert has been working for our family for over 20 years. Heck, he is family. It’s sad this happened.

We’re praying for his speedy recovery. Get well soon Mang Bert.

Oh, for those who don’ t know, the word “Mang” is sort of a title that we give to an elderly gentleman as a sign of respect.

The Fight Pompe Campaign

The Fight Pompe Campaign is a fund raising and awareness campaign for Pompe Disease. Not to many people know about Pompe and this is my way of spreading the word around.

h2. Fund Raising

Battling Pompe is taxing in mind, body, spirit as well as finances. I’m sure you know how it is to be sick. Medical expenses pile up. What more for people who suffer from a disease such as Pompe, where it is a day to day battle. A lot of paitients such as myself require special medical equipment such as Bi-Pap machines, wheelchairs, medical aide, etc..

I’m actually quite lucky since up to this point, my family and I have done well in dealing with it. I’ve worked most of my adult life in order to help pay for medical expenses. Not because my parents asked me to but simply because I wanted to.

In the Philippines, the country I live in there’s no medical insurance such as the ones found in the U.S. or Europe. So up to this point much of the medical expenses are paid for by my family and/or myself.

The money that will be raised from the campaign will be used in the following things:

h3. Medical Expenses

If you’ve read through my entries here in “Fight Pompe”: you know that I’ve started a new treatment. I feel really blessed that I’ve been given the chance to have this opportunity.

However I’ve come to realize that the medicine will not be enough. I need to give this opportunity the best attention it deserves. I need to put in time and effort into getting better. Time, meaning giving enough time for my body to heal with rest. Effort, by putting empahsis in Physical Therapy. These two used to take a back seat to work before this. I think it’s time that it changes.

I plan to take a leave from work for this year. Well not a total leave but I will be cutting back significantly the time I spend at work to give way to Physical Therapy and other things needed to get better. This also means that I will take a significant pay cut. That being said, the medical and therapy expenses doesn’t stop. So with your help I hope to be able to do this.

h3. The Foundation

Together with the doctors that I’m working with, we plan to set up a foundation here in the Philippines. The foundation will aim to help people, especially children with rare disease such as Pompe.

I’m quite lucky to have been born to a middle income family. We’re still lucky that we are able to afford the medical needs that come with dealing with a disease such as Pompe.

A lot of people here aren’t so lucky. In a country wherein majority of the population live below the poverty line, there are a lot of people, especially children who need help. Having a rare disease makes that problem all the more difficult. The foundation will try to help ease the burden. I know that this might be a lofty goal but everything starts with a dream and a lot of hope that we can make a difference.

h3. Donation to the AMDA

The “AMDA”: is the first organization or Pompe patients and family that I joined. They have been doing a lot of good work for the Pompe community. They have funded and continue to fund projects for the Pompe community. From grants for medical research all the way to facilitating patient conferences, the AMDA has done a lot for the Pompe community.

A part of the proceeds from the fund raising will be donated to the AMDA. In a small way the donation will help them continue the good work for the community.

h2. Awareness

Apart from the fund raising and arguably the more important part of the Fight Pompe campaign is creating awareness for Pompe Disease. The more people are made aware of it the more people can help the patients. The first step in dealing with problems is to know what it is. As people get to know more about Pompe, the more they can understand what the patients go through. Just the same for cancer and aids patients. The main difference is that both these disease affect a lot more people than Pompe. Hence the more people know about them.

Still, even if Pompe affects a lesser number of people it doesn’ t mean it’s less important. People also need to find out about it and other rare diseases in hopes that they may be able to help the patients. Who knows maybe someone out there knows how to help Pompe patients better.

h2. How You Can Help

h3. Fight Pompe Merchandise

I’ve started developing some merchandise for Fight Pompe. You can find them at the “Cafe Press Store”: You can support the campaign by purchaisng the stuff there. Wear them so that Fight Pompe can gain visibilty. Right now I’m still starting so the merchandise is still limited but do come back from time to time as I continue to add to it.

h3. Spread The Word Around

Share the link to the Fight Pompe web site with your friends and family. If you have a web site or a blog, please add the Fight Pompe link to it. The more people visit this site, the more people will know about Pompe disease. That in itself is a big deal.

h3. Donate

If you’re feeling kind but you don’t want any of the merchandise or you’ve bought some already but still want to help, you can make a donation. I’m still setting up the donation facility but if you’re raring to help out, send me an “email” so I can give you ways to send the money.

From the bottom of my heart, my deepest thanks. In reading this alone you’ve already helped. You’re now aware of the Fight Pompe Campaign. You may or may not be ready yet to help but at least you know about it. You can always come back when you feel you’re ready.

Thank you and God Bless.

Juan Magdaraog
Fight Pompe!

What’s Fight Pompe? Why Does It Matter?

Fight Pompe is my way of contributing to the Pompe community. I started it out as a blog, which was residing at “Blogger”: for a time. I eventually wanted a fully blown web site so I decided to buy the domain and host it at “GoDaddy”:

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.

Fight Pompe!

1st Fight Pompe Illustration

I’m very happy this morning. Early morning I should say… May Ann Licudine is an artist that was introduced to me by my friend Nikki. I was looking for an artist that could help me create an illustration for Fight Pompe. Something that I could use to pilot my awareness campaign as well as to kick off the fund raising project I want to do.

I believe nothing happens by chance. It’s by God’s grace that I met May Ann. From the moment Nikki told me about her and when I saw her works, I knew I found the right artist.

May Ann also has hearing impairment a form of disability. But true to my belief that when people focus on their “ThisAbility” they can truly shine. May Ann is a very gifted and talented artist. It’s my honor and privilege to have her create the first illustration for Fight Pompe.

Fight Pompe Illustration

Let me tell you a bit about the illustration. I wanted to create an illustration that will depict the fight against the disease called Pompe. At the same time I wanted to show the courage of the people fighting Pompe. I chose an illustration depicting children because a lot of Pompe patients are children. They have truly show tremendous courage in dealing with the disease. I wanted to honor their fight. So that’s how the concept came to be.

I’ll be coming up with some other things in the days to come to kick-off the awareness and fund raising campaign. Check back soon.

Thanks May Ann… I love the drawing.

Fight Pompe!

Maryze and Anton

Maryze and Anton Toasting One of the great things that has happened as a result of having Pompe is meeting amazing people. I met Maryze years back. She also suffers from Pompe. Anton is her boyfriend.

The great thing about Maryze is that despite having Pompe, she has done a lot. Not just for herself but for other Pompe patients as well. Not to mention other countless people she encounters everyday. She works with the IPA (International Pompe Association) to push for programs for other patients. Despite her having a difficult life, she’s devoted to making the lives of other patients better. She’s done sooo much, for me and for others. For that I will be eternally grateful.

Anton on the other hand is also terrific for another reason. He met Maryze before the effects of Pompe was that apparent. Till now he has stayed with Maryze despite what has happened. I think they share love, in the true sense. Through thick and thin they’ve stayed with each other. Anton’s a great guy. Definitely. They’re both lucky to have each other.

Now in the picture attached to this entry shows Maryze and Anton proposing a toast. They promised to propose a toast when I started my infusions. True to their word that’s what they did.

Thanks guys!