By Ashutosh Sharma
On September 11, 1977, I was born in Delhi, the capital of India. There was a wave of greetings in my house, because after five years of an elder sister, a boy was born. In those days, birth of a boy was given great importance in India. His family’s dreams were associated with his birth, that he would grow up and decorate our family’s future–but destiny had a different plan for me.
When I was 9 months old, I fell from the bed and got an injury on my forehead. After this, one night I found my head swollen like I had a blue ball attached to my forehead, which used to hurt a lot. My parents consulted many doctors, and they gave me medicine, but it seemed to be of no use back then. The doctor decided to do an operation on that blue swelling, and when he did the puncture in my forehead, he saw that it was filled with blood from inside. He changed his decision and prescribed me pain relief medicine and gave it to my mother and told her to keep me at home and let me rest, that it will be cured on its own. After a few months, that wound started to heal, and I began living with this unknown disease.
As time passed, the condition worsened. I started to bleed from my mouth, probably the gums, while I was sleeping at night. It filled my mouth with blood and all my clothes and bedsheets were covered with blood. By morning, my mouth was completely closed with blood. My mother slowly removed the blood clots from my mouth with wet cotton, and after cleaning the clots, I was able to open my mouth to eat something. A few minutes later, there was a series of bleeding, sometimes severe pain in my elbow or soreness in the knee, and we were completely unaware about what was really causing it.
When I started going to school, my mother would take me, but after a few days, again the pain and swelling started in my arms and legs, and I was no longer able to go to school. It used to happen many times with me. Every kind of medicine was administered, but everything remained ineffective, and there was no improvement in my condition.
When I was 9 years old, someone told us that All India Institution of Medical Science (AIIMS) in New Delhi is a very big hospital and that we should go there for my checkup. When I went there, they got my blood tested and a doctor who had taken the training of Haemophilia diagnosis from Italy examined me and told us about the disease named Haemophilia-B, a rare genetic bleeding disorder where an individual lacks sufficient levels of a blood protein called factor IX needed for blood clotting. He said that there was no treatment in medical science for haemophilia, and it could only be prevented by plasma and blood transfusions. At that time AIDS was very widespread in the world due to blood transfusion, so my parents decided not to transfuse blood. The doctor told us that I had to avoid all kinds of injuries since my blood would not clot, or seal a wound to stop bleeding.
After the advice given by the doctor, my father lost confidence in me and agreed to keep me at home for the rest of my life, but my mother did not lose her courage and continued my studies by appointing a tutor. My mother kept taking me to school from time to time to get the annual examination. My school life continued with pain, and whenever I had a joint pain, I could not sleep all night and kept screaming with pain. I kept crying all day and night in pain, and it made the situation so difficult for me to move ahead.
When I was 16 or 17 years old, I was playing with my friends when I mistakenly hit my head against the wall, and it caused deep internal bleeding in my brain. I was brought to Delhi from Jind (Haryana) where a friend of my maternal uncle had heard the name of this disease and informed us about the Hemophilia Society in Delhi, and it was there, that for the first time in my life, I was given a life-saving injection of factor IX, which was injected in my veins, allowing my blood to clot. I received this for 10 to 15 days. At that time the cost of these injections was high, and it was not easy to afford for the middle class, but my father sold his precious land to save my life. Due to brain haemorrhage, half of my body was paralyzed, and it took me one year to become normal.
After that day, whenever I had bleeding in my arms, legs or shoulders, my father would pay for factor IX injections from Delhi Haemophilia Society. Sometimes we were unable to afford injections, and I had to struggle again with unbearable pain, but every moment in this fight, my mother was with me as a boon, which is why it is rightly said, “God cannot be everywhere, so he created mothers.”
Since I had to travel to Delhi in agony again and again for factor infusions, my parents decided to move to Delhi permanently. After 1 year, I started my own clothing business in a famous market in Delhi. My business went very well, but one evening while I was returning home from the shop, I met with an accident and my hands got fractured and I suffered a lot of injuries. I had to purchase factors in bulk and was quarantined at home for 8 months. My new business–and my hope–shattered due to my health issues.
We left Delhi sometime after and came back to my ancestral home, Jind (Haryana). In 2000, my mother became a municipal councillor of our district, and I joined her in social work. After a few years, suddenly I got another brain hemorrhage and got admitted at the Lok Nayak Jayaprakash Hospital in Delhi. From there, I started getting free factors from the government hospital, and they injected factor IX for several days to improve my injuries. After a lot of effort, my life was saved once again.
In 2005, I got married to Jyoti. Her family was told all about my illness and Jyoti knew everything and agreed to give her consent for marriage.
In 2006, I was not aware of the investigation of hemophilia in the womb until I was blessed with a girl. My whole family was engaged in celebrating the happiness of my newborn child. Everything was going well in my life, but then one day I had a severe pain in my head and began to vomit. After a CT scan, we found out that I had suffered from brain haemorrhage for the third time and then came the long and painful process of recovery–but I recovered from it for the third time. But my whole family had to bear the mental depression at that time. After a few months, life became normal again, and I kept myself busy with my daughter and family, until both my hands, knees and right hip had worsened by 70 to 80% due to repetitive episodes of internal bleeding.
My wife took really good care of me and used to suffer with me through day and night. She encouraged and prepared me to face the challenges of this life. After marriage, my mother was able to take some rest from household work; otherwise, it was becoming very difficult for her because her health was also deteriorating.
In 2010, we had another girl, and now I was doing more work and living life and keeping myself busy, but the pain returned after some time, and there was bleeding with terrible pain, and it felt like my whole work and efforts had been in vain.
One day in 2014, I got the idea that now I had to do something for other hemophiliac patients who were like me so that the pain that I suffered in my life would not be experienced by them. During that time, factors VIII and IX were unavailable at our local hospitals so anybody who had an episode of bleeding had to travel all the way to Delhi. I started trying to solve this problem with the help of God and my family. I found all the patients of my district who were like me and started a movement, in which me and all my colleagues protested to get factors in our district hospital by writing a demand letter to District and State Administration of Health Department. With hard work and efforts, we got the factors in our district hospitals, but the supply always fell short at the time of need.
In 2017, we formed our own Hemophilia Society in Jind, for which I was elected as the president with the unanimous consensus, and then we succeeded in getting affiliation of our registered society from Hemophilia Federation India, New Delhi. Now in our HTC, we are getting the supply of factor injections needed through HFI recommendation from World Hemophilia Federation, Canada. Today, hemophiliac patients in our district and other adjoining districts are getting the treatments they need–which brings the patients and their families such a great sense of relief. Today, the scenario has completely changed from what I experienced with the help of WHF, and a new hope is clearly visible in our lives.