So I became friends with some people in the international community, and they encouraged me to become active in groups for women with bleeding disorders. And then I got involved in the local community na, but I was international first, and then one of the ladies that I met said that there was a group in the Philippines. So I got introduced to the support group here in the Philippines, and that’s how it started. 2006.
KM: I have to ask, Andrea, siyempre for a parent, for you to discover, I just wanna ask, how did you pull yourself through that? The realizing, finding out that your daughter has a bleeding disorder, that your mom actually died of it, and then that you also have it. I want to understand how you managed to pull through that period, knowing that you have it? How did you get yourself through it?
AT: Of course at first, there was a lot of fear, I would say. And sometimes, I would question, “Why did I pass it onto her?” So I felt like it was my fault. I think it’s normal for those who just got diagnosed. In fact, even some of the parents in our community, when they see their children suffering from pain, from bleeding, they would say na, “Sana ako na lang. Sana hindi ko na siya napasa sa anak ko.”
I think it’s normal, but also, I think I’m also the kind of person that I always look at the meaning of life. Like why did God give this to me? Why did this thing happen? And how can I turn it around, how can I turn it into something positive? So the sadness that I felt when Star and I got diagnosed, I turned it into something productive. I felt na my mom’s death should never go to vain. There has to be a reason.
I was only 17 when my mom died. Growing up without a mom in your teenage years, the teenage angst and all that, without a parent there, a mother at that, it’s really not easy. I said, “I have to find meaning in this.” That’s why I got involved in the community, that’s why I said na I don’t want people, children like me whose parents died of bleeding, of this disorder, to suffer the same way that I suffered.
I think I suffered more emotionally because I was quite young when my mom died, and it was 17, 18 years old — those are the times that you really needed a parent to be there and help you navigate the world.
KM: So you have Star, Star is your youngest, you have two other kids, Ben and Sophia. Did the doctor have any explanation why only Star got the disorder?
AT: Well, it’s the chromosome. Usually, they share my chromosome and their dad’s chromosome, so it explains it that the two others — ‘cause it’s usually a 50/50 chance of your children to also get the disorder.
KM: Okay, so 2006. You have been living with it for 15 years.
AT: Actually, I’ve been living with it since I was born since it’s genetic, but I did not really bother, I didn’t really think about it. I would say that earlier on, my quality of life was affected because I didn’t know what was happening to me, like sometimes I would pass out, turns out I was severely anemic, and there was no explanation to it, ‘yung gano’n. So it’s your quality of life that has been affected.
KM: So the question begs to be asked — how is hemophilia managed and how does it cost? And maybe, Andrea, to give hope to those who need it, maybe as an advocate, who can people turn to if they need to be guided in the management of hemophilia, including the cost managing?
AT: Right, so how do we navigate life with hemophilia, it really helps when you are part of a community. Because having a close relationship with a doctor is really good, but having a community that understands how you feel, because sometimes, you’re not good all the time, you don’t feel good all the time.
Especially when you experience pain, when you’re not feeling well, sometimes you feel grouchy, and people around you don’t understand what you’re going through. But if you have others like your co-patients, they also go through the same. Then you can share thoughts, you can share, “How do you address that?”
For example, I always say na parang iba-iba naman how we look at life, or even if we go through the same experiences, it’s really how you look at your circumstances and how you go through it that really matters. Like ako, I never allowed hemophilia to bring me down, or stop me from doing what I want, really.
Many times, I’m on the way to the office, because of Manila’s traffic, and suddenly I have a bleed, I have to go to the hospital. Following day, I have my blood transfusion. Following day, I go back to the office. It’s like nothing happened. I don’t want it to oppress me.
Hemophilia is really manageable, it’s a genetic disorder, it’s a lifelong disorder, but it’s also manageable if you just listen to your body, and you feel when you’re starting to have a bleed. We have this clotting factor, anti-hemophilic clotting factors. You infuse it.
So we’ve taught our members to do home infusions at the onset of the bleed, but we always remind them to go and see their hematologist, because not every pain means hemophilia. It could be from other disorders or other diseases, so we always tell them, you infuse, but then you have to see a doctor. You can manage it through that factor infusion.
How much does it cost, it depends. It depends on your weight and on the severity of the bleed. For example, my usual bleed is menorrhagia, or profuse periods. I am advised to infuse every 12 hours, and one infusion costs USD $2,000 to USD $3000. Dollars because these medicines are not available here. If you convert it into peso, yeah, just do the math.
We’re very fortunate, we’re very blessed that we have humanitarian donations from international organizations. That’s how Hemophilia Advocates Philippines (HAP) has been helping patients, through these donations from our friends in the US.
KM: Okay. Aside from the medicines, and teaching them to infuse at home, do you also give counseling? Like other support groups, especially for those who are having a harder time? I love how you said you will not let the condition oppress you. That is the exact opposite of the victim mentality, and that’s exactly what we need. A fighter.