The past few days had been depressing for me. I went to the Visayas over the weekend with Project Share founder Laurie Kelley, volunteer Rose Noyes and Columban priest Fr. Don Kill to visit hemophiliacs.

Project Share is a US-based humanitarian organization that has been sending factors to over 40 developing countries including the Philippines.

Laurie and Rose came to country for a fact-finding mission and meet Filipino hemophiliacs her organization has been helping these past few years. Thanks to Fr. Don, the amiable “lolo” of hemophiliacs, we met more than a hundred sufferers and their families and saw up close the plight of hemophiliacs in the country.

The more I got involved in this advocacy, the more I feel so blessed and the more I believe something has to be done. Only few days before Laurie and Rose came, one young man named Warren died of bleeding at PGH (Phil. General Hospital). Another boy died at UST. All because they did not get the treatment they needed on time.

Every day since I learned of his death, I think about Warren. He died because the Bureau of Customs refused to release the factors he needed for his treatment due to a very minor technicality. And this s*@&!d technicality caused Warren’s life! The little boy at UST died because his family was so poor they couldn’t afford to buy the factors needed to stop his bleeding.

Sometimes I struggle when I hear of situations like this. A few months ago, when we rushed Star to the hospital due to profuse nosebleeding, there was a boy at Cardinal Santos who needed 1,000 iu’s of factor VIII (4 vials at about P4,300 each). The child’s caregivers (he was an orphan) could only afford to buy 3 vials. The following day, he died. It was way too late when he got the transfusion. I felt so bad when I learned of the boy’s death. We had six vials (about 1,500 iu’s) of the same factor that time because Star’s nosebleeding stopped and her hematologist thought it was better to save the factors in case of emergency. Factors are not only expensive, they are also difficult to buy here in the Philippines.

Star is, by far, so blessed than the majority of the sufferers in the Philippines. We are probably among the 5 percent of sufferers who have the capacity to buy factors when we need it. Not that we have lots of money. Truth to tell, there are times that finances are hard to get by but God always provides.

In the past few days of going around, visiting and interviewing hemophiliacs, stories of how parents helplessly witness their child suffer are not uncommon. In fact, last Saturday while we were in Dumaguete, we witnessed a young boy crying in pain because of bleeding in his shoulder. His mother could do nothing but cry along as she hugged her son. When I volunteered to help her bring her son to the hospital, she just stared at me and said, “But we don’t have money.”

It was a gripping reality that reflected the plight of majority of Filipino bleeders. Another mother, Manang Rita, narrated to me in cracked voice how four of her five boys died one after the other because of hemophilia. Only the youngest, Jeff, who is the only one left of her boys, was properly diagnosed of hemophilia. But Manang Rita said there was no doubt all her four boys who had the same symptoms as Jeff, all died of untreated hemophilia.

Yesterday, Laurie, Father Don and I visited the grave of Jeff’s four brothers in Tanjay, about an hour drive from Dumaguete. Laurie took pictures of the grave, an “apartment-type” tomb with faded white paint.

As we were driving back to Dumaguete, I thought of Manang Rita and the pain she had to endure. While we lost our mother to an undiagnosed von Willebrand disease, Manang Rita’s pain was four times over. No wonder she is moving heavens to keep Jeff alive.

Photos: (top) One-year-old Christian Ramos, a hemophiliac from Danao City, carried by his mother. We chanced upon Christian at the Sotto Memorial Hospital in Cebu. He had been bleeding for a day but his parents didn’t have money to buy factors. Thankfully, Laurie had a factor in her bag and immediately infused it on Christian. In a few seconds, the bleeding stopped.

Second photo shows our team with the members of Hemophilia Association of the Philippines-Cebu (HAP-C), including my nephew Yan-yan (in wheel chair). Yan-yan is the son of my first degree cousin, Daday.

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.

14 Comments

  • Tiff says:

    I thank the internet for connecting me to you. I am Filipino and my daughter has been diagnosed with severe Factor VII Deficiency. I lost a son last year to a brain bleed. I live in the United States and have yet to find someone with our ethnic background that is also part of the bleeding disorder community. Even though we are oceans away from each other, I find comfort knowing that we are not alone. I’m sure you can sympathize with the cultural hurdles we face. I look forward to following your blog updates. It has been very educational and enlightening.

  • Andrea H. Trinidad-Echavez says:

    Thank you for dropping by, Tiff. I'm so sorry to hear about your son. My mom also died of profuse bleeding 22 years ago, when I was barely a teenager. It is very hard indeed to lose a loved one because of a genetic disorder. We're continually organizing bleeders here in the Philippines. You can imagine how doubly hard it is for people here where factors are not only very expensive but also hard to find. Pray with us that our government will soon institutionalize hemophilia care here. God bless you always!

  • hfuderanan says:

    hi, im a mother of a 5 yr old son with hemophilia.. i just want to ask where to find a hemophlia foundation here in philippines because i want my child to be a member and attend any seminars if any.. pls help me.. thank you so much!

  • hfuderanan says:

    hi! just want to know where to find information about hemophilia foundation here in the philippines. I have a 5 yr old son who has hemophilia and i want to attend any seminars regarding these.. please help me.. thanks! this is my email-add: hfuderanan@yahoo.com

  • Andrea H. Trinidad-Echavez says:

    hi! where are you based? in metro manila, there are two hemophilia organizations — HAPLOS and Philippine Blood Brothers. please email me your contact numbers at andrea.trinidad@ymail.com so i can send you their contact information.

  • Rose David says:

    Hello Ms. Andrea. Thank you very much for your help bec. thru you and
    Dra. Mary Ng Chua we knew Rev. Father Donald Kill (Blood Brothers Aid). My son Aryll David, 12 y/o got an intracranial bleeding last april 19-May 7, 2009. he was confined in UST Hospital. I'm very hopeless at that moment when you called up in nursing station looking for me and gave the contact number of Fr. Don Kill to tell him the situation of my son.
    God is so great because Project Share sent us factor viii for my son. Haplos Officers also supported us including their prayers. Now Aryll is on his 1st year hi-sch and his brother Allaine, 16 y/o (also a hemophiliac)is 1st year Med-Tech Student this coming June. May God bless you always…..

  • Andrea H. Trinidad-Echavez says:

    Hi Rose! I hope your boys are okey now. Project Share is truly a blessing to us bleeders. Please keep in touch. Kindly email me your contact details so I can send you my too. God's strength be always with you!

  • louie says:

    wanna say THANK YOU VERY MUCH to Dr. Jen Ong.. for giving me factor 8 last may 7.. for 25 years po na hemophiliac ako ngayon lang ako nabigyan ng factor 8.. which is matagal na namin hinahanap 2 of my brother died dahil sa bleeding.. tnx god naka survive pa po ako .. na diagnose ako when i was 4 years.. and because of Dra. Jen nalaman namin na severe hemophilia A pala ako

  • Andrea H. Trinidad-Echavez says:

    Hi Louie,

    Where are you based? Member ka ba ng hemophilia group sa area nyo? Please email me sa andrea.trinidad@ymail.com para ma-send kita ng contact details sa iba ibang hemophilia groups na puede mong lapitan.

    God bless!

    Andrea

  • Tiffany Andrade says:

    Miss Andrea,

    Do you know where we can buy Factor VIII here in the Philippines?? I tried to contact Haplos but they are not answering their phones ( landline and cellphone ). We need that medicine very urgent. Hope to hear good news from you. Thank you.
    P.S. the factor VIII sold at the hospitals are much expensive….

  • Joel says:

    Hi Mam Andrea,

    I am Joel father of Angelo Josh delas LLagas. Thanks for your help mam,

  • Elaine Robles says:

    thank you for accommodating my father.. and for helping us…

  • Clare says:

    Hi, a pleasant day to you!

    My name is Clare I am seeking for treatment for my seven-year-old cousin who is now suffering internal bleeding of his brain; he is diagnosed with Haemophilia B. He is currently confined at the ICU at the National Children’s Hospital in Quezon City and the doctor prescribed him Factor IX medication for treatment. We already tried searching for the precious medication from major hospitals and pharmacies here but to no availability. I am really concerned why in the world it is very difficult to get this medication. I may be just an ordinary person asking for help to you but please, I am seeking for a possibility and asking for your kind help for us. I feel pity for my cousin and his parents who are helpless in searching for the medication. My cousin is such a good boy, kind and humble. I just don’t know why he is suffering this kind of illness. I know there is no cure. But it would be a great help for us to know where/how we can get and buy such medication. A response from you soon is very much appreciated.

    Thank you so much and Gob bless.

    • Hi! Have you tried calling HAPLOS or the Phil. Hemophilia Foundation? They might be able to help you get assistance from Project Share or World Hemophilia Federation. Who is your hematologist? Please text/call me at 0915-3062273. I won’t promise anything but I’ll try my best to help you look for meds for your cousin. Praying for his fast recovery.