I got involved na — when you’re seeking, when you have something strange, because in the early 2000s, I think we were diagnosed in 2006. Wala pang Facebook at that time. There was hardly a global community, parang email-email lang no’n; you could Google, there were Yahoo groups, pero not as active as now. And it’s a bit scary when you don’t know what the condition is about, right?
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.
But I guess, Andrea, not all have the mental capacity, or even the spiritual capacity to help them think that way. So does Hemophilia Advocates Philippines also provide counseling, the support system, a holistic support system?
AT: Right, so we have our youth group. They’re very active, they have a group chat where they check on each other. They have a monthly kumustahan where they invite friends from the international community to join them, and it’s just a conversation; sharing how they feel, things like that.
Then we have the women’s group, we call them Momshies. These are the moms, the wives, female relatives, female caregivers, they’re the momshies. I’m so happy, I’m very proud of them, they go beyond just sharing experiences. In fact, a few of the Momshies put together a business and I think they already have 4 franchises for that. They have this takoyaki kiosk.
So it’s so nice, they help each other, especially during the pandemic. We go beyond just helping with medicines, we also help in terms of providing opportunities like grants, financial aids for those who lost their jobs. As long as they have a business proposition, we look for sponsors for them to start their own business. We have already given, I think, 10 families have already benefited from that.
We provided financial aid for those affected by the Taal eruption last year. And then the pandemic happened, so we have provided some financial aid to these families. Twenty to 30 families, I think.
And then we have the men’s group, they’re composed of the older hemos, the dads, and husbands. They’re called the He-Men.
KM: Speaking of the pandemic, I wonder, is hemophilia considered a comorbidity?
AT: Not really. It’s not in the classification, unfortunately.
KM: Okay. So if anyone who is reading the transcript of our interview, or watching the video suspects that he or she or a loved one has hemophilia and they want to contact the Hemophilia Advocates Philippines, where do they go?
AT: They can go to our website, which is hemophilia.ph, or they can find us on Facebook, Hemophilia Advocates Philippines, we have a page. They can message us, or email us at [email protected]
KM: Alright, we’ll take note of that, we’ll highlight that during the interview. So I guess my last question, Andrea, is your message to the people who are watching our interview, who might — of course, before we publish the interview, we’re already putting out material on what we are discussing in this particular episode.
So definitely, people who are tuned in probably suspect that they have that; them or their loved ones. What is your message to them?
AT: For those who have not been diagnosed, or even those who are already diagnosed, sometimes knowing that you have a lifelong disorder which you don’t really heal from, you just manage it, sometimes it can be scary. You feel scared, or you feel sad, which is a normal feeling.
I would say that a lot of people with hemophilia, as long as they listen to their body, they take care of themselves, they can live normal lives. There are a lot of persons with hemophilia who have become successful in life.
In fact, there are twin boys, I’m so proud of them. They’re Filipinos, from Dumaguete. I’ve seen them since they were babies, until they were growing up, and they moved to the US, and they just recently passed in Harvard.
So they’re going to Harvard, both of the boys, and I would say that these are very inspiring stories because they really worked hard to be able to get a good education and they wanted to give back to the Philippines. After they graduate from Harvard, they plan to come back to the Philippines and really serve our community.
Hemophilia is not a death sentence; it’s not a life sentence. It’s something that can be like a friend. He’s there, sometimes that friend is toxic, but you just have to live with it and accept it, that life is like that. Just always have that positive outlook that not all days are bad days.
KM: Thank you so much. You really are a very inspiring woman. I say that because I know you beyond being the face of Hemophilia Advocates Philippines, right? You really are an inspiring woman. Imagine those twin boys, you basically raised them, you were there while they were growing up, and they are there, I’m sure because of your support to them and their family.
That concludes our episode for today on hemophilia and Miss Andrea Trinidad’s story. For any questions you have for their community, you can contact them directly through the information she shared with us, but you can also reach out to them through HelloDoctor.ph, and we’ll make sure to connect you with them.
So once again, this is Kai Magsanoc of Hello Doctor Philippines, thank you for joining us today.
AT: Thank you so much, thank you HelloDoctor Philippines.
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