Hoping Still - Abraham Charvet's Story

I was diagnosed with Haemophilia A (severe) at 7 months old. I knew all along that I was different.

As a child, I was not allowed to run around and play with other kids my age. I felt really unhappy all the time. I remember asking my parents a lot of questions about why I can’t do this or take part in that. Without my parents’ knowledge, I would often play games with friends at school, only to suffer from bleeds later on in the night.

It was difficult for my family to support the high cost of treatment that I needed in order to have an active lifestyle. I vividly recall the nights where I stayed up suffering from the pain and discomfort, while my parents sought financial assistance from kind relatives and friends so that I could receive treatment.

My Grade 1 class, taken when I was 6 years old. I’m seated front row, second from the left with elbow pads to protect them from injury.
Today, my challenges remain the same – finding ways to support the high cost of my treatment. The only difference is that I am now personally responsible for financing my treatment instead of relying on my parents. In the Philippines, patients do not have any source of reliable and subsidised treatment. Thus, I have to work as much as I can to make ends meet and possibly afford treatment whenever I bleed.

My family and I were educated about prophylaxis treatment, whereby anti-haemophilic factors are infused to replace deficiencies in my blood. Unfortunately, my parents could not afford such measures for me to have a better and more active lifestyle. I received treatment only when I had bleeding, and more often than not, I would suffer from bleeds without any treatment at all – just prayers, an ice pack, a box of painkillers, and sleepless nights.

Back in 2000, I was hospitalised for 3 whole months. I celebrated my birthday, Christmas and New Year inside a Charity Ward of a hospital not because of a bleed, but rather because of unsettled bills which prevented me from being discharged. I felt depressed and frustrated at the time. That was the point in my life when I realised that I have to do something for myself.

In my early 20s, I began working as a Customer Service representative. I wore baggy clothes to hide my physical deformities such as tennis elbows and swollen knees. I currently work in Customer Service and Sales. My hobbies, as expected, do not involve any strenuous physical activity to prevent bleeds. Reading comic books, watching movies and playing video games are my sources of entertainment.

I have always believed in this: There is nobody who can help you better than yourself. This is probably the best advice I can give to my fellow haemophiliacs. We know our physical limits and capabilities. Caution should be our first line of defense. It is unlikely that we suffer from a bleed if we avoid strenuous activities in the first place. So for myself, I exercise caution 24/7. I am conscious of what I eat, when I’m tired, or when I’m about to have a bleed. Having suffered numerous bleeds without treatment, my knees and elbows are now all deformed as a result. However, as I am very aware of my own body and condition, I am able to tell if I have bleed and I can easily determine the early stages of bleeding.

My hope is that haemophiliacs like me will be able to get better access to treatment and support. The way I see it, countries need to have a healthcare system in place that is designed to help us, with appropriate policies, adequate treatment centres and awareness campaigns. I am very thankful for organisations like Hemophilia Advocates Philippines for their truly admirable and noble efforts.