by Nabila Husseni

I am a severe Factor 5 Hemophiliac living in Ahmedabad, Gujarat, India. My name is Nabila Husseni I’m a 30-year-old female born in 1985. 
When I was 8 months old, I was sleeping beside my dad and suddenly I fell down from the bed and my lower lip got cut and it started bleeding. My parents first tried to stop the bleeding by pressing on it for a long time and applying ice to it. The bleeding would not stop. So my dad took me to the hospital.

At that time doctors were not well-educated about Haemophilia and its treatments, nor were there any facilities for plasma transfusions. So I got my diagnosis done at Mumbai, KEM Hospital. So my childhood was not like other normal children’s. I was not allowed to play in the garden with my friends. My parents gave me each and every facility inside the house. When I was four and half years old I had a brain haemorrhage as I fell down from the stairs at my granny’s house. As there was no facility of proper treatment for haemophilia in the city during that time doctors advised my parents to take me again to Mumbai, KEM Hospital.

Once there I was admitted, doctors suggested surgery, as my condition got critical. Simultaneously, plasma was transfused every day, twice a day. Fortunately the clot in the brain got dissolved and surgery was cancelled. I got discharged from the hospital, but proper medication was prescribed by the doctor for three years. My schooling was done under proper care of my teachers and principal, as my father gave them proper guidance and instructions about Haemophilia and its treatment. My principal held my hand and make me sit beside her at the time of lunch break, so that I didn’t run and go to play with friends.

I didn’t go to any picnics during my schooling phase. I learned cycling when I was in 10th grade. After schooling, I was mature enough to take care of myself so my father taught me to drive a two wheeler. I was allowed to drive and go to the college in third year of my graduation. Despite being a haemophilic I never lost my patience nor became pessimistic and I completed my degree in Commerce, got a degree of Bachelor of Education as well as received a post-graduation diploma in computer applications.

I have been working as a teacher in a renowned school of my city for five years now. My father is the President of the Haemophilia Society Ahmedabad Chapter and has been rendering his services to the haemophilia community since 1991.  I also joined the executive committee of my society in 2002. Since then I have been working with the haemophilia community. Earlier, because of studies and hectic schedule, I was not able to get involved with the chapter activities, but slowly and gradually I started getting involved. I began to attend the meetings, medical and motivational camps, awareness program and also participated in the activities that were conducted by our chapter like quizzes, camps, etc.

The Haemophilia Federation of India, under which 76 societies are working for the betterment of PWH, gave space to the youth for their betterment and development, and after the successful achievement of youth group, HFI formed a Women’s Group and invited me to be part of it, I got a platform to make my identity and dignity around the world. 
As I am the witness of how my parents face the difficulties in my upbringing when there were lacks of facilities at the time of my abnormal bleed. As I was a haemophiliac, my parents’ didn’t think about my marriage. But then also my father gave me the liberty to choose a partner of my choice accepting me with all my problems. But I simply concentrated on my studies and didn’t worry about having a boyfriend. But after some years when I was 26, my mom’s friend, who worked for my mom for 10 years and who knew me since my birth, came with a proposal for her son to marry me. My parents were very transparent with his parents, despite them already knowing things, my parents asked them to visit my haematologist and to ask any questions if they had any.

After all these things, I got married to their son, but unfortunately he turned out to be psycho, who was not at all willing to take me as his responsibility, as I suffered from two bleeding episodes after my marriage. And, he wanted a divorce. But all these hiccups made me so strong that now, I don’t get mentally disturb by anything. Many bad consequences aroused in my life, but while working with WGHFI I feel more confident and independent.