My husband Jared mentioned in his latest column that he works at a local organization called the Hemophilia Association of the Philippines for Love and Service (HAPLOS). It is truly a pleasure to serve other people with hemophilia, along with their families and carers, through the organization’s efforts.
I also have been active in HAPLOS’ endeavors since Jared and I began dating in college. I tagged along during meetings and got to know Jared’s friends in the youth committee. These are people he has known since childhood. They all practically grew up together and gave each other needed support in times of injury. Though they come from different backgrounds and have distinct personalities, hemophilia brought them together and helped them bond.
My work at HAPLOS is mostly voluntary. I am not obliged to take on any responsibilities within the organization. Yet, I chose to contribute to what they were doing because I truly believe that every person with hemophilia deserves to live a life as close to “normal” as possible. And I saw that HAPLOS had the capacity and potential to make this happen for its members, with adequate support.
Many patients join for practical reasons: free medication and healthcare. This is understandable. Here in the Philippines, most people are not wealthy, and hemophilia is expensive to treat because it is rare. Only through the efforts of patient organizations like HAPLOS can hemophilia patients get treatment. There really is no other way, since factor is not readily available here.
Prophylactic treatment isn’t possible yet in our country because our factor supply is inconsistent. Unable to get our own, we depend on donations from other countries. HAPLOS serves as the primary mover of medications from a donor country to the typical person with hemophilia.
Beyond providing medication, HAPLOS aims to extend psychosocial support to its members. From what I have observed among the organization’s youth, they seem to most value the friendships they have forged. Bound by a shared love of mobile games, some teenagers in the group formed a competitive gaming team. Meanwhile, musically inclined members regularly come together to sing or play instruments during HAPLOS events. I often join them because I love singing. Performing at special events is one of the ways I contribute to the community spirit.
Jared is part of the member development team. He and other members his age regularly meet to discuss events such as the Christmas party, annual youth camp, and Family Day. They are primarily responsible for planning activities.
Jared and I are a dynamic duo. Ever since I started volunteering for HAPLOS, I have attended these meetings with him. His friends were very kind to welcome me into the group. Like each of them, I have my own responsibilities. Because I have experience as a broadcast communications graduate, I help with documenting events, producing multimedia content, and coming up with material for the newsletter.
But it doesn’t end there! At the end of the day, we are reminded that being part of HAPLOS is all about fellowship and camaraderie. After a hard day’s work, we look forward to having fun as a group. It could be a hearty dinner followed by a night of musical jamming, for example, or a dip in the swimming pool. It’s an evening in which we all forget about hemophilia and just enjoy being young adults.
Now that Jared and I are married, I expect my responsibilities as a carer to be much greater than before. I am now his primary family, after all. HAPLOS has historically held programs for carers, mainly moms, but now that the youth members are growing up, I expect more wives and girlfriends will join. That’s something I look forward to!
I believe that being part of a patient organization can be an extremely helpful experience for the wives and girlfriends of young men with hemophilia. Getting to know an entire community of people with hemophilia has allowed me to better understand my husband’s condition. Also, many of the young men in the group happen to have supportive wives and girlfriends, too. And that’s the start of a sisterhood of HemoWives!
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.