I Nabila Husseni, a Para Hemophiliac, am suffering from Factor 5 deficiency, resident of Ahmadabad, Gujarat, India.
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 it for long and applying ice on it, but bleeding didn’t stopped. So my dad took me to the hospital. At that time doctors were not aware about Hemophilia and its treatment nor there any facility of plasma transfusion, so the doctor first thought to stop bleeding by giving the whole blood and then doctor advised my doctor to get me diagnosed by telling that I am suffering from some bleeding disorder. So I got my diagnosis done at Mumbai, KEM Hospital as per the doctor’s advice. And, it was diagnosed that I am having factor 5 deficiency.
So my childhood was not like the normal children. 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 got brain hemorrhage as I fell down from the stairs at my granny’s house. As there was no facility of proper treatment for hemophilia in the city during that time doctors advised me to take me again to Mumbai, KEM Hospital. There I was admitted for surgery, doctors suggested surgery, as my condition got critical. Simultaneously, plasma was transfused every day twice. 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 hold my hand and make me sit beside her at the time of lunch break, so that I don’t run and go to play with friends. I didn’t go to any picnics during my schooling phase. I learn cycling when I was in 10th grade. After schooling, I was matured enough to take care of myself so my father taught me to drive two wheeler. I was allowed to drive and go to the college in third year of my graduation. Despite been haemophilic I never lose my patience nor became pessimistic and I completed my Graduation in Commerce, Got Degree Bachelor of Education (for teacher) as well as did post-graduation diploma in computer applications, and working as a teacher in a renowned school of my city since 5 years..
As I am haemophilic daughter, my father who is President of Haemophilia society Ahmedabad chapter is rendering his services to the haemophilia community since 1991. And I also joined the executive committee of my society in 2002. Since, then I am working with haemophilia community. Earlier, because of studies and hectic schedules 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 chapter like quiz, 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 Group and invited me to be part of it, I got a platform to make my identity and dignity around the world.
As we all know that women play a pivot role in family, and society. SHE is playing an instrumental role to build up a strong family, a strong society and thus a strong nation. She is taking care of her siblings, parents, children, friends and in-laws, whether they are weak, strong, healthy or ill. Similarly in the haemophilia society also a woman plays an important role as she is the reason for the upbringing of the PWH. As you all are very much aware that in our society woman’s’ have incredible strength, power, tolerance, dedication, love and affection for the family members. We have to salute the virtues and power of women…. women are the person who takes the utmost care of a Pwh son, brother, or husband despite of all constraints led by the society. . And a Woman like me who is a sufferer of haemophilia can understand the feelings of other women’s. 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 hemophiliac, 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 feel to have a boyfriend. But after some years when I was 26, my mom’s friend, who worked my mom for 10 years and who knew me since my birth, came with a proposal for her son to get marry with me. My parents were very transparent with them despite they knew all the things, my parents asked them to visit my haematologist and to clear all the queries if they have 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 gave divorce. But these all 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. We are working very effectively; we are making our group stronger by inviting more women of PWH’s family. Every month our group is conducting women group meeting in our respective chapters and doing activities and shares our views and personal problems.
I attended all the regional workshops of women’s group and I got acquainted with different people and their problems. By meeting people I realized that my problems are nothing in comparison to their problems. So I decided to get more involved in the community and also I thought to find the other women who are suffering from haemophilia or other bleeding disorders. As the sufferer of Von Willebrand disease are also having many problems, and only thing is that they are not hyped and so they are not getting proper medications and treatment. I would really like to contribute myself in this movement as I believe that Women needs to be get educated about the medical aspects also, as there is a saying “educating a woman, educates a family”. So now my vision is clear that I have to find the women with bleeding disorder and to educate or acknowledge them with all the aspects to overcome the stress in any terms. As – “Women can be the bleeders too.”