At first glance, I usually strike people as a regular girl who goes to work on weekdays, likes art, notebooks, and pretty pens, and happens to have a boyfriend.
But one thing most people don’t know about me is that I’m a #HemoGirlfriend, or a partner to someone who has hemophilia. He also has epilepsy, which is a totally different sickness. (Read on to find out how the two became related in his case.)
What is hemophilia, exactly?
Whenever I tell people that my boyfriend, Jared, has hemophilia, they usually give me perplexed stares and ask: “What’s that?”
For an illness that seems to pop up all the time in biology class, it’s surprising that very few people seem to know about it in real life. I remember the first time I found out he had hemophilia — we weren’t together yet by then. A close friend of mine whom he had dated at one point (long story lol) told me about it, but I didn’t think about it too much — at least not until he and I got close. All I knew then was that hemophilia caused abnormal bleeding, and that Prince Alexei of Russia (Anastasia’s little bro) also had it back in the 1910s. Alexei’s life was far from a breeze, whereas Jared always looked strong and healthy.
According to the Mayo Clinic:
Hemophilia is a rare disorder in which your blood doesn’t clot normally because it lacks sufficient blood-clotting proteins (clotting factors). If you have hemophilia, you may bleed for a longer time after an injury than you would if your blood clotted normally.
Small cuts usually aren’t much of a problem. The greater health concern is deep bleeding inside your body, especially in your knees, ankles and elbows. That internal bleeding can damage your organs and tissues, and may be life-threatening.
In the case of my boyfriend, he’s missing Factor IX, therefore he has Hemophilia type B, less commonly known as “Christmas Disease.” The disease affects people in different levels or severities, depending on how much clotting factor is missing. My boyfriend doesn’t have much clotting factor in his blood, so his hemophilia is of the severe kind.
How do you get hemophilia?
Hemophilia is usually inherited, and it only affects males. (There are forms of pseudo-hemophilia that also affect girls, if I’m not mistaken, such as Von Willebrand’s Disease, but it’s much easier to refer to true hemophilia as hemophilia and stick with VWD for the female bleeding disorder). It’s X-linked, so affected males get it from a faulty gene that is passed down by their mother. The mom, who may or may not show symptoms of a bleeding disorder, is called a “carrier.”
However, in some cases, one can still get diagnosed with hemophilia even though it doesn’t run in the family. My boyfriend is one of these cases. His hemophilia was the result of a genetic mutation. He’s hoping that, one day, gene therapy will become advanced enough to cure hemophilia, but until then, he has to rely on factor infusions given right after a bleeding (sometimes preventively, before an event that could cause a bleed, such as intense physical activity).
In developed countries, factor infusions are given to hemophilia patients regularly (prophylaxis), but because we live in the Philippines, which is a developing country that doesn’t officially recognize hemophilia and other chronic illnesses as disabilities, we must rely on donations from hospitals in other countries, like the US. Due to a shortage of supply, medication is usually given only as treatment for bleeds, not as a preventive measure. Oftentimes, these medications may even be way past their expiry date; thankfully, these are still considered good to use. Since law declares that expired medicines be banned from importation, the local organization must negotiate with the authorities to get the medication through.
Whenever I tell other people about my boyfriend’s hemophilia, they usually worry that he would bleed to death. Oftentimes, they believe this means that he shouldn’t cut himself, even with a piece of paper. This couldn’t be more false! As a matter of fact, Jared lives a pretty normal life — cooking, going to work on weekdays, heading to the gym. He loves pumping iron! (Hence that body of his, hehe.)
A lot of people worry that if he goes to the gym, he might hurt himself, and end up bleeding. I tell them this isn’t the case. Luckily, Jared has managed to build up his strength through swimming and other sports in elementary and high school. That gave him great leverage when we both started lifting in college. Because he was able to strengthen his muscle and joints more through lifting weights, he doesn’t bleed anywhere near as much as he used to. That is why we both strongly advocate a lifestyle of fitness for patients with hemophilia. It’s really all about striking a good balance: not too much working out that you stress your muscles and joints and end up with a bleed, and not too little of it that you don’t develop any musculature, rendering you more prone to injury. We recommend gradual lifting to make your muscles stronger, and therefore less likely to bleed.
Epilepsy is what poses the greatest challenge to my boyfriend these days. He got in when he was in Grade 5; he was playing on the bed when he had a bad fall and hit his head. Because he has hemophilia to begin with, the bleeding turned out much worse, and he ended up with a life-altering brain injury. The epilepsy is now all that’s left of that injury, a condition he struggles with to this day.
His seizures aren’t as bad as the ones often portrayed in the media — nothing of the shaking, convulsing, screaming sort (the kind people used to mistake for demonic possession in the past). When he has seizures, he usually just stares; his head sometimes rolls to the side, and he occasionally talks gibberish. Sometimes his hand muscles stiffen. But it’s usually the same internal manifestations in his head, according to him — at the onset of a seizure, he starts to remember things, and the feeling is that of “deja vu.” He has what the medical world calls “complex partial seizures.” After the seizure, he returns to normal, but not after going through a “confused phase.” This phase can look awkward, and sometimes he does funny, out-of-context things. Sometimes he strips off his shirt and attempts to get nude. 😛 At worst, he falls asleep for a few minutes. But he quickly wakes up, resumes consciousness, and becomes aware that he’s had a seizure. Afterwards, he resumes what he was previously doing.
I’ve always admired his way of keeping up with life’s demands — studies, and now work — despite the challenges posed by his epilepsy. His work ethic is absolutely stellar — boy, does he have a sense of duty. Put me in front of a computer and ask me to do something for an hour, and by the thirtieth minute I’ll have drifted off.
That’s the upside of things, the silver lining. But of course, life isn’t all rosy for those who live with chronic illness — so much more for him, and his hemophilia/epilepsy. Both illnesses affect him in many ways, sometimes in ways that are interconnected. For instance, if he gets a bad bleed, he’ll stay up all evening, unable to sleep due to the pain. The next day, he gets seizures due to lack of sleep.
There are bad days, too. Days with a lot of clouds in the sky. Days when it’s difficult to see a single glimpse of good. These are the days I know he very much needs, and deserves, support.
I’ve always made it a point to try to be his number one supporter, encouraging him to keep living, to keep chasing after the good things and try to see the sunlight behind the dark clouds.
I know within myself that I can’t do everything alone, and it’s been my biggest aspiration to reach out to other people who might be going through the same thing, be part of a bigger community, and hopefully be able to give one another support. 🙂
I post frequently about my boyfriend’s condition(s), and our involvement in advocacies. Check out all posts in these categories:
Should you like to get involved, here are some links to local organizations that seek to help Filipinos with hemophilia and epilepsy, as well as links to some educational content:
- HAPLOS Foundation (Facebook group)
- Philippine Hemophilia Foundation, Inc.
- Philippine League Against Epilepsy (Facebook page)
- Philippine League Against Epilepsy (website)
For collabs, questions, and more: