“Being a hemophilic is just a matter of adopting a diverse lifestyle that is more protective and safe”
Growing up in a developing country with Hemophilia meant more than discomfort, pain, and disability to me. I remember the times spent lonely at home, away from friends. At times, friends were reluctant to include me in games due to the fear of the disease that I would end up with an injury or a severe bleed. During childhood, my playtime was well guarded, excluding me from all school/extracurricular activities. I felt deprived of my entire childhood and it gave me an inferiority complex. Growing up as a teenager was not easy either.
The social stigma that surrounds Hemophilia has adverse effects not only on the patients but also on their relationships with family, friends, and colleagues. As the disease progresses, It can cause a condition of caregiver burnout for the family members, and they may also be affected by the stigma often attached to the disease. I was diagnosed at the age of 14 months with hemophilia “A” [severe factor VIII deficiency]. In the early 1980s, there was nothing much to treat my condition except FFPs [fresh frozen plasma] in Pakistan. Because of knee damage, I needed a leg brace by the age of ten and depended on crutches and a wheelchair at different times. I give my parents great credit for teaching me that life is manageable and I was never allowed to feel sorry for myself. I’m so blessed to have a caring wife and a lovely daughter.
Later at the age of 12, I was tested and got positive reports of co-infections. My physician and my father decided not to disclose the results of the test. I was quite young to digest the details. At the age of 22, upon knowing my status of co-infection, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. My friends started avoiding me and my workmates preferred not to interact frequently. I visualized several things to suppress the reality until finally I surrendered myself to Allah. First question that came to my mind was “WHY ME?” Then I looked for answers; “Allah only burdens those capable of bearing the burden”. I have gone through many trials and surely there is a reason…Allah tested me. Then I read a verse from the Holy Quran; trials given to people are commensurate to the courage they have. Rather than being sad, I felt proud. Living with a chronic disease along with Hemophilia teaches you how to persevere and cope with adversity.
Having transcended my fears, with the belief that the future lies in Allah’s hands, I live each day positively and with the courage to face the uncertainties and complications sourced by Hemophilia and my co-infection. I have seen life as not as simple as others have; the challenges I faced have given me the resolve to not only help myself but also others. In my teenage; I decided to volunteer for the hemophilia cause by joining the local Hemophilia Society in 1998. I’m currently serving Hemophilia Foundation-Pakistan [HFP], as a “Community Advisor”. In my previous role, I served for eight years as President of PHPWS and represented Pakistan on many national, regional, and international platforms. As a patient activist; I have been advocating to achieve treatment for all those living with bleeding disorders. I strongly believe in the greater involvement of Hemophiliacs at all decision-making levels. After doing my Master’s degree in Business Administration [MBA]; I got an opportunity to work for United Nations. I believe education and determination to face the reality can lead hemophiliacs to a healthier and more successful life.