My name is Nabila Husseni, female, age 32, with parahemophilia (factor V deficiency). I am a resident of Ahmedabad, Gujarat, India.
When I was 8 months old, I was sleeping beside my dad and suddenly I fell down from the bed. My lower lip started bleeding and didn’t stop. The doctors at my local hospital didn’t know about hemophilia so I had to travel to Mumbai (300 miles away) to get my diagnosis.
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 years old I got a brain hemorrhage after falling down the stairs at my granny’s house. Again, I had to go to Mumbai. The 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.
My schooling was done under the care of my teachers and principal, as my father gave them proper guidance and instructions about hemophilia. My principal used to hold my hand and make me sit beside her during lunch break, so that I don’t run and go to play with friends. I completed my Graduation in Commerce, got a Bachelor of Education degree, as well a Post-Graduate diploma in computer applications. I have been working as a teacher in a renowned school of my city for 5 years.
My father became President of the Hemophilia Society Ahmedabad Chapter in 1999, and has served the hemophilia community since then. I also joined the executive committee of this Society in 2002. Many challenging circumstances have come into my life, but my work with the bleeding disorders community makes me feel more confident and independent. Initially, people - relatives, friends and colleagues - were looking at me with the eyes of sympathy. But I was very clear that I do not want sympathy. So I started representing myself with much more confidence and that brought respect for me in everyone’s eyes.
My mission is to find other women who are struggling with hemophilia or other bleeding disorders in my community. I want to educate and acknowledge them with all the respect, making sure they know “women can be the bleeders too.” I want to show women how magnificent they are, and to inspire them to step up and grab the life they’ve dreamed about with both hands. I want to bring gender equality in the society and also in the bleeding disorders community.
A few months back I got allergic to my only treatment – Fresh Frozen Plasma. My hematologist said there is no remedy. I would be lying if I said that I am not worried, grinding my teeth, and flying into rages. But instead of falling apart I decided to start a new project. I am currently raising funds for a food truck, which will help to lessen the financial burden on people within my bleeding disorders community.
There is a lot going on right now. But we still have to make our self-care a priority. In order to be useful, and in order to create the world we want to live in, we have to look after ourselves - now more than ever.