There are many kinds of diseases around the world like cancer, diabetes, hepatitis A and B. I was born with a hereditary bleeding disorder called hemophilia. It is a rare disorder where the blood does not clot normally due to the imbalance of one of the 12 factors. My twin brother and I lack Factor 8.
As a child, I remember struggling not only physically but also mentally and emotionally. I started to walk at 2 years old because I was not allowed to crawl. My knees would all be black and blue and we could not afford to inject them every day. Since 1, I have injected at least once a week just to have a near-normal life. I have known what a “coming” bleed felt like and have, on several occasions, hidden the information to myself because I just felt bad my parents had to spend for another injection. As I grew older, I learned the lesson of early detection of a bleed to save on our precious injections. The injections were painful at the start as they were done intravenously (through my veins in the hand) especially when I put on weight and the doctors could hardly see my vein. At 4, my Kuya Reymil, one of my mother’s brothers who also has the disorder, started injecting me. He made me feel relaxed and comfortable, the injections did not hurt anymore. Except for times when my Kuya was out of town and I had to go to the hospital and a doctor injecting me caused a dislodge in the needle and had to try many times. The worst experience I had so far was in Summer 2012 when my brother and I were training for the International Mathematics Training Guild in Manila. All 3 doctors in the emergency room of a hospital in Quezon City dislodged the needle 6 times! I shouted in pain and my mother was so angry. Finally, the consultant came and was able to inject successfully. I had to rest one whole day after that to relax. It was so scary but then I realized these things happen. I just have to accept them as they are.
There are actually 3 kinds of hemophilia: mild, moderate and severe. My brother and I and our uncles have the severe kind. We have Hemophilia A so we lack the Factor 8 in the blood. Hemophilia is inherited, passed on by females but manifested in males. There are rare cases where some persons develop it in their lifetime. This can happen when your body forms antibodies that attack the clotting factors in your bloodstream.
There are many things a hemophilia is limited to do, especially in developing and poor countries where there is no support from the government. We cannot play ball in the field so in school during Physical Education, we act as the scorer or cheerer. It is also fun. Sometimes my brother and I forget we cannot play and kick the ball. Our teachers and classmates immediately call our attention. We cannot also walk long enough especially in inclined places. This is why we have to ride to school and have to be carried up to our classrooms in the third floor. At the start, I was embarrassed to be carried at my age but my parents made me understand why it was needed and they also told my teachers and classmates, I was able to be comfortable with it. Sometimes my classmates would walk with me and my parents who also took me to school. My twin brother and I are absent at least once a week due to bleeds in our body parts. Mostly it is our hand or knee ankle. This year alone I had about 29 days of absence and about 18 times tardy when we had injections before the class started. I am thankful to our teachers who understand our condition and give us the chance to make up for tests we miss. After the periodic test, often have to take a battery of make up tests. It is difficult but really, I cannot complain. I am able to go to school whenever I am okay and try to have good grades like everyone else.
It is really not that sad, I tell you. Over and above my physical limitations, I can practically do what I want. Read all the books I would like to read, make friends, play Vanguard, be loved, do facebook sometimes, watch a movie, eat my favorite food, play with my classmates. Of course there is a part of me that would have wanted to run or jump or walk as much as I can but my family has always reminded me there is so much in life to be thankful for. I have learned to count my blessings. There are times when I feel down but when I think of how much God has given me and my family, despite our financial constraints and shortcomings, I cannot help but be happy. My parents always remind me to do my best at anything I do and thing that nothing is impossible. We all have a shot at the best life we would like to live.
My hemophilia is only one among several disabilities existing in this world but I know there is a lot to thank God for. I have complete body parts and the ability to walk when some people don’t have. I can speak my mind and do mostly what I love. Anyhow, all of us have limitations be they physical, emotional, psychological. We are all imperfect. My disorder is both a burden and a blessing. I am glad I am healthy and have the chance to enjoy life.
