Posted on behalf of community member Mary Ann Massolio, Hematology/Oncology Social Worker,...
My name is Nabila Husseni, I’m 30 years old. I am a severe factor V hemophiliac living in Ahmedabad, Gujarat, India.
When I was 8 months old, I was sleeping beside my dad and suddenly I fell from the bed. My lower lip got cut and it started bleeding. My parents tried to stop the bleeding by applying pressure and ice for a long time, but the bleeding didn’t stop. So, my dad took me to the hospital. At that time doctors were not aware about Haemophilia or how to treat and there were no facilities who gave plasma transfusions. The doctor first thought to stop the bleeding by giving whole blood. Then the doctor advised my doctor that I get tested for a bleeding disorder. I went through testing at Mumbai, KEM Hospital as per the doctor’s advice. And it came back that I have factor 5 deficiency.
My childhood was not like 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 a brain haemorrhage after falling from the stairs at my granny’s house. During that time, there was no facility that had proper treatment for haemophilia in the city, so the doctors recommended I go back to Mumbai, KEM Hospital. The doctors suggested I have surgery due to my now critical condition; I was admitted to the hospital. In the meantime, plasma was transfused twice a day. Fortunately, the clot in my brain dissolved and surgery was cancelled. I was discharged from the hospital and given proper medication to take for the next three years.
My schooling was done under proper care of my teachers and principal. My father gave them proper guidance and instructions about Haemophilia and its treatment. My principal would hold my hand while I sat next to her during lunchtime to make sure I wouldn’t run and play with my friends. I didn’t go to any picnics during my schooling phase. I learned to ride a bike 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 having haemophilia I never lost my patience or became pessimistic. I completed college with studies in Commerce, received a Bachelor of Education for teaching. I also completed post-graduation studies in computer applications. I have worked as a teacher in a renowned school in my city for five years.
Raising Awareness for Women with Bleeding Disorders
My father is President of the Haemophilia Society Ahmedabad chapter and has been working with haemophilia community since 1991. In 2002, I joined the executive committee of my society. Due to my studies and hectic schedule I was not able to be involved but slowly I got more involved. I began attending meetings, medical and motivational camps, awareness programs, and chapter quiz and camp events. The Haemophilia Federation of India (HFI) includes 76 societies that work to improve the lives of PWH (people with haemophilia). The organization created space for youth development and now have a successful youth group. When HFI formed a women’s group and invited me to participate I felt I now had a platform to make my concerns heard around the world.
As we all know women play a pivotal role in the family and larger society. SHE is instrumental in creating a strong family, strong nation and even a strong society. She takes care of her siblings, parents, children, friends and in-laws, whether they are weak, strong, healthy or ill. Similarly, in the haemophilia society women are vital to the upbringing of the PWH. As you all are very much aware that in our society women have incredible strength, power, tolerance, dedication, love and affection for family members. We have to salute the virtues and power of women. Women are the ones who take the utmost care of a PWH whether it’s a son, brother, or husband despite all the constraints placed by society. A woman like myself with haemophilia can understand the feelings of other women. As I witnessed how my parents faced the difficulties of my upbringing when there was a lack of facilities and care for my abnormal bleed.
As a haemophiliac, my parents didn’t think about my marriage. My father gave me the freedom to choose my own partner who would accept me with all my problems. But I simply concentrated on my studies and didn’t feel the need to have a boyfriend. When I was 26, my mom’s friend and coworker of ten years (who knew me since I was a baby) told us her son would marry me. My parents were very transparent with them about my disorder and asked them to visit my haematologist to clear any queries if they have any. After all these things I got married to their son, but unfortunately, he turned out to be psycho. He was not at all willing to take me as his responsibility after I suffered from two bleeding episodes after we got married. He wanted a divorce. These hiccups made me so strong now, and I don’t get mentally disturbed by anything. Many bad consequences have come up in my life, but while working with WGHFI I feel more confident and independent. We are working very effectively and making our group stronger by inviting more women of PWH families. Every month we have women group meetings in our respective chapters, doing activities, sharing our views and personal problems.
I’ve attended all the regional workshops of the women’s group. I’m acquainted with many different people and their problems. By meeting different people, I realized that my problems are nothing in comparison to their problems. So, I decided to get more involved in the community and to find other women who are suffering from haemophilia or other bleeding disorders. As women with Von Willebrand disease are also having many problems. The only thing is that it is not hyped as much 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 need to be educated on the medical aspects of a bleeding disorder. There is a saying “educating a woman, educates a family”. So now my vision is clear that I must find women with bleeding disorders to give them the knowledge of all the aspects to overcome stress in any terms. As – “Women can be the bleeders too.”
To read more of my story and raising awareness for women with bleeding disorders, you can visit my blog: http://hemophiliacwomen.blogspot.in/ and see more of my story on Victory for Women.