Invisibly Rare

By Nabila, Hemophilia, India, November 29, 2020

Do you know the meaning for rare is “extraordinary.” Yeah, I’m rare, but I’m also extraordinary. My name is Nabila, female, age 35, with parahemophilia (factor V deficiency). I am a resident of Ahmedabad, Gujarat, India.

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.

Hemophilia has played a vital role in my life, I can say that it's one of a kind of blessings 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. 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 content writer in a renowned IT company in my city. 

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. Whether I wanted it to or not, my rare bleeding disorder has played such a huge role in who I am today (By the Grace of God). Wherever I go, it follows, so I might as well see the bright side. 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.

I am lucky to have such supportive, knowledgeable, and strong parents because of whom I was diagnosed at an early stage (alhamdolillah). But sometimes it makes me think of all the families with children with BD who have suffered because they didn't catch it at birth. I have heard that many people with bleeding disorders have suffered or died because they weren't diagnosed at an early stage. 

Having a rare disease means explaining your disease a thousand times, to the same people who still do not understand. Having a rare disease also means you lack the comfort of doctors having a general understanding of what is happening in your body when help is needed urgently or you are experiencing a traumatic situation. 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.

I believe in constant evolution and to rainbow everything. I’ve learned to expect the unexpected. I believe in making my own universe. My mission is 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. 

Every day is a challenge and I’m still reminded regularly of my limitations. 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 don’t let any episodes keep me from reaching for my dreams and setting new goals. I believe that Women need to be educated about the medical aspects also, as there is a saying “educating a woman, educates a family”. So it is very important to find the women with bleeding disorders and to educate or acknowledge them with all the aspects to overcome the stress in any terms. As – “Women can be the bleeders too.” As a person with a rare bleeding disorder, I was the girl who was not allowed to go anywhere alone. But in July 2014 – I went alone to the Philippines to get culture exchange experience and to learn communications skills. As a woman with a rare bleeding disorder, I have volunteered to facilitate women’s group meetings in my hemophilia chapter and at national level to learn leadership skills. I have also represented my country India in the GNMO training at Orlando through voicing out my presentation on ‘Gender Equality in Bleeding Disorders Community. Also, I have volunteered at Women’s Booth at World Congress at Orlando and Glasgow in 2016 and 2018, respectively.

These meetings have given me opportunities to hear different problems and learn about the issues of women. For many people with bleeding disorders, pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, or engage in routine activities. I take bleeding episodes as a challenge and face it bravely so that it doesn’t make me weak in any aspect. I also represented India, my life till now as a female with bleeding disorder in the society and in the organization via Skype call in the inception event of Pakistan – NMO’s women group.

I have learnt that our work is going to fill a large part of our life, and the only way to be truly satisfied is to do what we believe is great work. And the only way to do great work is to love what we do.

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.

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.

In 2017, 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 deal with my life with a smile on my face and yes of course feeling grateful to God for everything. I’m living for the day when the detractors say, “The amount of success she’s had is unreal.” And I’ll just smile knowing that they were right…on a level they couldn’t have imagined.

As a female with a rare bleeding disorder (para hemophilia – factor 5 deficiency), I feel we need to shine a light on patients with rare factor deficiencies and demonstrate the needs and concerns.

“Without giving up hope—that there’s somewhere better to be, that there’s someone better to be—we will never relax with where we are or who we are.”

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