My name is Nabila Husseni and I am a para hemophilic i.e., Factor V deficiency. In times of exciting new developments in the care of people with bleeding disorders, especially in the treatment of hemophilia, Gender Equality and Outreaching has now been incorporated in the developing countries in the bleeding disorder organizations, which is applaudable.

It is highly appreciable to see that voices of women with bleeding disorders are heard and given equal opportunities where men within the existing hemophilia community are now working together with women as a way of empowering them.Organizations within the bleeding disorder community are making important strides in addressing women and bleeding disorders.

As a female with ultra-rare deficiency factor-5, 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 proper treatment, which is still prevailing. When I was 8 months old, I fell down from the bed which resulted in a cut on my lower lip, causing profuse bleeding. At that time, doctors were not yet aware of Hemophilia and its treatment. When my bleeding did not stop, I was brought to the KEM Hospital in Mumbai and was diagnosed as a female with factor 5.

My childhood was never normal. I was not allowed to play outdoors with my friends. When I was four and a half years old, I fell down the stairs and had a brain bleed. I was on the verge of death. Doctors in my city refused to handle my case and again, I was taken to the KEM Hospital in Mumbai. The brain bleed affected me, I started to have seizures and I stammered while talking. I was then referred to a neurologist and for six years, placed under medication.

Over the years, I suffered different types of bleeds ranging from excessive and painful menses caused by an ovarian cyst (again near to the verge of death) to getting fractured in both of my knees and having spontaneous bleeds in the knees. Being a female “bleeder”, I face issues that male hemophiliacs do not face physically and in personal life too. Yet, these challenges have not stopped me from living my life to the fullest.

I was the girl who was not allowed to travel alone. But in the past few years, I had traveled to the Philippines (my first solo trip) where I got exposed to another country’s hemophilia work than to the USA and the UK for attending WFH congresses.Girls also need to be tested for bleeding and we now know there are also many people with rare bleeding disorders in India.

I graduated with a Bachelor’s degree in Commerce and another Bachelor’s degree in Education for Teaching. I also received diploma certificates in computer applications. I have worked as a teacher for five years in a renowned school in my city. Currently I work with an IT firm as a technical content writer.

My vision is clear — to find women with bleeding disorders and to help them deal with various aspects of their life. This way, they will be able to overcome whatever challenges that they may encounter. I have witnessed how my parents faced difficulties as I was growing up with no access to proper treatment.

In my spare time, I volunteer as a communications specialist and women’s group coordinator for the Hemophilia Federation (India). I was also named as one of the ambassadors of MyGirlsBlood,which was an international network of women with bleeding disorders run by Mrs. Cheryl D’ambrosio from USA till 2016. My hope for the future is to be an example to other women bleeders to strive and also to become the voice for the ultra rare deficiencies like factor 5,2,13 and a few others. We are rare but we do exist. Please please give a little focus on us too.