Nabila Hussenii (India): Rare, extraordinary, strong

Do you know a synonym for rare is ‘extraordinary’? Yes, I’m rare, but I’m also extraordinary. As a female with ultra-rare factor 5 deficiency, I had to face many hiccups in my life and I have witnessed how my parents faced difficulties as I was growing up with no access to adequate care or treatment.

When I was 8 months old, I fell from the bed which resulted in a cut on my lower lip, causing profuse bleeding.  At that time, doctors were not yet aware of haemophilia and its treatment. When my bleeding did not stop, my family brought me the 500km from our home in Gujarat to the KEM Hospital in Mumbai, where I was diagnosed with factor 5 deficiency.

Haemophilia has played a vital role in my life, I can say that it’s a kind of blessing in my life, through which I was able to know my strengths and was able to explore myself.

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. At school, my principal used to hold my hand and make me sit beside her during lunch break, so that I didn’t go and run to play with friends. I was treated like a glass doll.

I completed my graduation in Commerce, and got a Bachelor of Education degree, as well a Post-Graduate diploma in computer applications. I am now working as a content writer in a renowned IT company in my city.

In 1999 my father became President of the Hemophilia Society Ahmedabad Chapter and has served the haemophilia community since then. I 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 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.

Whether I wanted it to or not, my rare bleeding disorder has played such a huge role in who I am today.

I believe in constant evolution. Over the years, I suffered different types of bleeds ranging from excessive and painful menses caused by an ovarian cyst, a life-threatening brain hemorrhage to getting fractured in both of my knees and having spontaneous bleeds. My mission is to find other women who are struggling with haemophilia or other bleeding disorders in the community and to show them how magnificent they are by inspiring them to step up and grab the life they’ve dreamed about with both hands.

I am lucky to have such supportive, knowledgeable, and strong parents, which led me to getting diagnosed at an early age. But sometimes it makes me think of all the families with children with bleeding disorders who have suffered because they didn’t catch it at birth. Therefore, it is so important to raise awareness of these rare bleeding disorders. We need more research and more answers. We need more testing to be done worldwide.

Nabila Hussenii is one of the haemophilia community members sharing her story to show her engagement in our ’15 years, 15 stories’ series, marking 15 years since the NNHF was established.