At Peace with Hemophilia
Marc Pangilinan is a man of many firsts. He is a first generation (native-born) citizen in his family. He is also the first person to be diagnosed with hemophilia.
Marc’s parents are originally from the Philippines, where the culture tends to be very private. Because of this, Marc did not participate in the hemophilia community growing up. He visited his HTC (Hemophilia Treatment Center) when it was necessary, but he knew no one else with hemophilia until he was 26 years old. Marc was born in 1987, during a time when hemophilia wasn’t very well understood and parents were afraid to let their children play with anyone that had hemophilia. Marc felt very alone.
Because Marc was born in the 80’s, he was among some of the first to receive factor as the primary method of treatment. Besides being considered experimental, there was a shortage of it and it was very expensive to obtain. This meant that Marc did not get factor like he should have, which lead to his ankle becoming a major target joint. Luckily, Marc’s mother was a nurse and helped Marc stay on track when it came to infusions. Marc likes to say he was “sheltered not babied.” His mom instilled in him the belief that this was the life he was given so he needed to live it to the best of his ability. This helped Marc become independent and okay with being alone while having hemophilia.
When Marc became an adult, he decided to get involved with his local chapter because he realized that he couldn’t deal with living with hemophilia by himself anymore. He wanted to meet new people and see if there were others out there who felt like he did. He volunteered for a while with the local chapter and shortly after, he began adventure traveling, stepping away from the community for almost 5 years.
In 2017, as Marc was about to embark on a 3-month solo backpacking trip around Southeast Asia, a buddy of his invited Marc to volunteer at the first ever national hemophilia camp hosted in the Philippines. Marc met people who had very little or no access to the kind of care he had in the US. This revealed the reality of what Marc’s life would have been like, had he been born in the Philippines. When Marc was a week old, he experienced a near-fatal bleeding episode after a surgical incident. This particular surgery is considered mandated by his culture and if it was done in the Philippines instead of the US, it is more than likely he would have died. It was this experience that not only led to his diagnosis, but also solidified in his mind just how fortunate he was to have been born in the US.
After returning home after that experience, Marc had a chance encounter with the Executive Director of his local chapter (after not interacting with the hemophilia community for 5 years) and was able to share the experience he had in the Philippines. The director then offered him the chance to be a camp counselor for the teen camp which the chapter holds every summer. During his time as a counselor, he had the opportunity to share his story, his background, what it was like for him growing up and how he was starting to overcome it.
Marc began to see people find value in his story. He decided to cancel plans he had made for another long-term solo backpacking trip in another part of the world because he knew he needed to stay where he was. He needed to work with the community that was right in front of him. He started to find people who had the same background he did and who could relate to what he had been through. He was able to talk to parents and encourage them in how to help their children. Marc saw his story making a difference in other people’s lives.
At the age of 29, Marc came to peace with having hemophilia. He says he no longer has the feeling he needs to defend himself when someone calls him a hemophiliac. Marc doesn’t feel the need to prove himself, but is motivated to work harder to be on the same level as “normal” people. He acknowledges that life will be hard because hemophilia is his reality, but says, “it’s okay because that is [his] normal.” He lives with the mentality that “you have to pay to play” and encourages others to be at peace with living with hemophilia.
Now at 31, Marc now serves as the Educational Programs and Community Events Manager for the New York City Hemophilia Chapter (NYCHC). Marc is also the very first staff member at the 10 year old chapter to also have hemophilia. He believes that the hemophilia community needs to move towards conquering hemophilia in the mind, not just in the physical. Marc stands with the belief that the state of loneliness and lack of community is more severe than facing the daily complications of being diagnosed with hemophilia.
As a man of many firsts, Marc has used his experiences to empower others with the understanding that “conquering hemophilia in a meaningful way isn’t just about being able to do what everyone else could do. It is being able to, as close as possible, have the same freedom to choose for yourself what you can and can’t or … want or don’t want to do.”