The journey of a female bleeder : From Daddy's little princess to International Ambassador - Story of Nabila Hussenii

I have Factor V Deficiency, which is also known as Para hemophilia, a rare
bleeding disorder. Over the past 50 years, most of the world has focused on
discussions and research concerning boys with Hemophilia. However, we
know now that girls also need to be tested for bleeding disorders, and in India,
there are many people with rare bleeding disorders.

I have a clear mission – to find women who suffer from bleeding disorders and
to help them deal with various aspects of their lives. This way, they will be
able to overcome whatever challenges they may encounter. I have witnessed
how my parents faced many difficulties as I was growing up without access to
proper treatment.

When I was 8 months old, I accidentally fell off the bed, which resulted in a cut
on my lower lip that kept bleeding profusely. At the time, doctors were not
aware about Hemophilia and its treatment. When my bleeding did not stop, I was
brought to the King Edward Memorial (KEM) Hospital in Mumbai.

I did not have a normal childhood when I was growing up. I was not allowed to
play outdoors with my friends. When I was 4 and half years old, I fell down
from the stairs and suffered 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 not only caused me to have
seizures, I started to stammer when I spoke. I was then referred to a
neurologist and had to take medication for the next six years.

Over the years, I suffered different types of bleeds, ranging from excessive
and painful menses caused by an ovarian cyst, to getting fractures and
spontaneous bleeds in both my knees. Being a female “bleeder”, I face
different physical and personal issues compared to male hemophiliacs. Yet,
these challenges have not stopped me from living my life to the fullest.

I was once the girl who was not allowed to travel unaccompanied. But in the
past few years, my parents realized that I had gained confidence after
attending women’s workshops, and I finally went on my first overseas trip
alone to the Philippines, where I gained exposure to the work done there with
hemophilia patients.

I graduated with a Bachelor’s degree in Commerce and another Bachelor’s
degree in Education for Teaching. I have also received diploma certificates in
computer applications. Previously, I worked as a teacher for five years at a
renowned school in my city. I am currently working at an IT firm as a Quality
Assurance Officer and Content Writer.

In my spare time, I volunteer as a communications specialist and women’s
group coordinator for the Hemophilia Federation (India). More recently, I was
named as one of the ambassadors of MyGirlsBlood, an international network
of women with bleeding disorders. My hope for the future is to be an example
to other women hemophiliacs, and to strive and help others.