I’m Naveen P Havali, I’m 24 years old, and I have been living with Hemophilia A, a severe bleeding disorder. Today, I work as an Executive Officer at KHS, where I help others like me to cope with this condition.

I come from a middle-class family. My father runs a fancy store Business and my mother is a homemaker. I also have a younger sister. Life has always been simple, yet my journey with Hemophilia has added a layer of complexity and challenge to my family’s life.

The First Bleed

It all started when I was just a 6-month-old baby. I was peacefully sleeping in a cradle when the rudrakshi mala around my neck pressed into my chest and caused internal bleeding. My parents were terrified and rushed me to the nearest hospital, where the doctors advised them to take me to Davangere for further treatment. That’s when I was diagnosed with Hemophilia A, with less than 1% of Factor VIII in my blood, which classified me as having severe Hemophilia.

This news was devastating for my parents. They had already experienced loss, as my maternal uncle had died from an intracranial bleed due to a lack of treatment. His suffering was a constant reminder of the dangers to my parents.

A Painful Childhood

Growing up with Hemophilia was extremely difficult. I had spontaneous and repeated bleeds into my joints almost every month, sometimes up to 3 times a month. The pain was excruciating, and I spent countless nights awake, unable to find any relief.

But the most frightening moment came when I was in the 11th grade. One morning, my father came to wake me up, but I wasn’t responsive. They rushed me to Davangere, where Dr. Suresh Hanagavadi suspected I had a brain bleed. An CT Scan confirmed the worst—acute brain hemorrhage. I spent a week in the ICU, battling for my life. Thanks to timely treatment with Anti-Hemophilic Factors (AHF) provided by KHS, I managed to pull through, but it was a close call.

Even after my discharge, the road to recovery was long. I suffered from headaches and dizziness for years and had to take epileptic drugs for five years. I still occasionally experience headaches.

Social Isolation and Mental Struggles

During my school and college days, I struggled with a sense of isolation. I avoided socializing with friends and even distanced myself from my family. The psychosocial challenges were immense, and I found it incredibly difficult to accept my condition. I felt different and that difference made me want to retreat from the world.

The Turning Point

In 2014, KHS organized a youth camp in the forests near Udupi. My parents had to push me—quite literally—into the bus, as I was hesitant to go. However, this camp turned out to be a life-changing experience. I met others like me, formed lasting friendships, and learned to accept my Hemophilia. I began to see my condition not as a curse, but as a part of who I am—something I needed to live with rather than fight against.

That camp ignited a passion in me to become more involved in the Hemophilia community. In 2016, I was elected as the president of the youth group at KHS, where I helped organize various welfare and fundraising activities. It gave me a sense of purpose.

A New Chapter

After completing my education, KHS entrusted me with the role of Executive Officer in 2018. This position has been an incredible opportunity to give back to the community that has supported me through the darkest times of my life. Every day, I strive to help others with Hemophilia find the strength to face their own challenges and lead fulfilling lives.

I’m forever grateful to Karnataka Hemophilia Society for not only saving my life but also giving me a platform to make a difference in the lives of others. Hemophilia may be a lifelong condition, but with the right care, community, and mindset, it doesn’t have to define you.