KM: So it’s a very delicate condition. I’m interested to know, Andrea, what is your hemophilia story? How did you discover that you had it, and what were the symptoms that you saw and felt?
AT: Okay. I think my symptoms, I would say it really started with my daughter Star, although my mom died of bleeding on the operating table kasi she wasn’t properly diagnosed. But it was really during that time that I gave birth to Star, and then at 3 weeks old, she had a nose bleed. I already had this fear na she might have inherited — kasi when my mom died, we realized na this runs pala in our family, because I have a nephew who also has hemophilia.
Then a few years after my mom died, her brother got diagnosed with another bleeding disorder in the US while going through tonsillectomy. So it really runs in our blood. When I gave birth to Star, and then she had a nosebleed, that was her first symptom. When I gave birth to her, she had bruises all over her body, and I thought it was just like a birthmark.
And then after a while, it went away, tapos she had a nosebleed. So no’ng nag-nosebleed na siya, we brought her to the ER, and I asked the doctor, “Is it possible for her to have hemophilia? Because my nephew, her cousin, just got diagnosed.” And then the doctor said no, because she’s a girl.
In the olden times, women were not diagnosed with hemophilia, they were only diagnosed as “carriers.” Like Queen Victoria, she had 4 daughters who also carried the gene, so they were called “carriers,” even though women showed symptoms like menorrhagia, which is profuse periods. So that started it.
We brought her abroad for the diagnosis because here, she wasn’t diagnosed. And then since I had family history, the doctor also decided to check my blood, so we were both diagnosed with first, another type of bleeding disorder called Von Willebrand disease¹, then eventually my lab work showed that I had Hemophilia A, which is factor-8 deficiency.
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.
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