Pinoys with rare diseases need help, too

The ice bucket challenge began in July of this year, when Peter Frates, a US baseball player suffering from Amyotrophic Lateral Sclerosis (ALS) posted a challenge in his social media account. By now, many of us already know what it is, and many have donated to the ALSA.org, amounting to $100M and counting.

But before hearing about the illness ALS, I first heard about the ice bucket challenge and wondered what all the fuss was about. Over on YouTube, blooper videos of the ice bucket challenge across the US were uploaded and earned many “Likes.” Aside from the challenge itself of pouring ice water on yourself, people leveled up their efforts by either pouring the ice bucket or making use of some contraption. Hollywood actors got in on the action, and many of us followed suit.

The Filipino Flash Nonito Donaire was the first to have taken the challenge here in the Philippines after being challenged by wrestling superstar Dave Batista. I think the first one to go on live TV for the ice bucket challenge here in the Philippines was Dr. Vicki Belo, who was challenged by Dr. Zein Obagi. Doc Vicki challenged me; and I challenged Mutya ng Masa Doris Bigornia, who challenged the ever-ready Korina Sanchez, who challenged Kabayan Noli de Castro and Vice Ganda. Kris Aquino challenged Tunying Taberna, who challenged Justice Sec. Leila de Lima and BIR Commissioner Kim Henares, and so on and so forth. Everyone was just game to be part of the advocacy. Recently, ABS-CBN chairman Gabby Lopez took the ice bucket challenge and challenged GMA 7 president Felipe Gozon and TV5’s Manny Pangilinan.

The ice bucket challenge chain has spun across the globe. It’s fun to watch individuals shrieking at the feel of the ice cold water on their heads. But besides the entertainment value of such a gimmick, thankfully, people are now aware of the disease. 

ALS is just one of the 7,000 rare diseases (based on records from the World Health Organization), half of which affect children because of genetic defects.

But take note, we also have our share of rare diseases in the Philippines.

According to the website of Philippine Society of Orphaned Disorders (PSOD), the Institute of Human Genetics has a record of 244 patients with inborn errors of metabolism in 2011. 

The poster boy of the PSOD is Dickoy Madaraog, a friend surviving from Pompe Disease. Dickoy uses a machine which helps him expel the carbon dioxide that builds up in his system. Normally, a person inhales oxygen and exhales carbon dioxide, but because of his Pompe Disease, his muscles are not functioning well that’s why he is unable to do that. Carbon dioxide is poison to his system.

I’m glad that he is still alive because he was told that he would only live until 30 — he is now 36.

He is one of the luckier ones, so to speak, because at least he gets his regular enzyme treatment twice a month. He has genetic experts from the Philippine General Hospital (PGH) who have been helping him for years. The doctors have become his friends.

Dickoy hopes that generous Filipinos will also take notice of our kababayan with rare disorders.

He wants to take the ice bucket challenge himself, but I teased that he might only be ready for a tabo (dipper) challenge. Dickoy has a great sense of humor, too. He texted me this:

“I want to raise money for PSOD programs. Which include advocacy, patient welfare and a little research, too. 

Several programs we want to do. But advocacy and patient welfare first and foremost. 

Yung patients na walang cure at least give them good quality of life.”

Thanks to the ice bucket challenge,  people are taking notice, in fact a bill has been filed, Rare Disease Bill authored by Sen. Sonny Angara. The rare disease bill seeks to provide funding and assistance to patients with rare diseases. I’m keeping my fingers crossed that the bill becomes a law before all the hype melts away.

When I took the ice bucket challenge, I was told that I could still donate to the ALS association. I’m glad that I didn’t get to figure out how to do it. Thing is, we have patients with rare disorders here in our county that need help. I’m glad that I saved my donation for PSOD. 

For those who are still into the ice bucket challenge and have not yet donated, do consider helping our fellow Filipinos who suffer from rare diseases, just like ALS.

Please get in touch with Philippine Society of Orphaned Disorders at www.psod.org.ph or deposit donations at  BPI with account name: PHILIPPINE SOCIETY FOR ORPHAN DISORDERS, INC.; account number: 3361 0040 26; Branch: Connecticut, Greenhills, San Juan.

(E-mail me at [email protected].)