Naveen Havali

Life of a PWH (Person with Hemophilia)

Story of and by – Naveen Havali

I want to share my life experience with you all….!

I am Naveen Havali, belonging to a middle-class family & my father has his own business (fancy store). My mother is housewife and I have a younger sister who is studying in BSc.

 When I was 7 months baby, while sleeping in the cradle, Rudrakshi mala pressed to my chest , and I  had bleeding over the chest. My parents were scared at that time and took me to the nearby hospital. They were advised to take me to Davangere. Later, I got diagnosed as Factor VIII (Hemophilia A) , less than 1% (severe). My parents panicked and this news was shocking to them,  as my maternal uncle had died of bleeding. As per my grandmother and mother, my uncle suffered with joint bleeds & died of IC bleed due to lack of treatment.

My childhood days were miserable. I suffered from spontaneous repeated bleeds in the joints, on an average 3 to 6 times per month. I had sleepless nights due to chronic pain.

The worst part of my life was, I had CNS bleed when I was 11th class. One Morning , my dad came to wake me up, I had slipped into an unconscious state.  I was taken in an ambulance, to Davangere and  Dr. Suresh Hanagavadi suspected CNS bleed and advised for a MRI. Report confirmed of acute bleeding  in the brain (Brain Haemorrhage). I struggled in ICU for a week,  and bleeding did not progress as I received timely treatment (Anti Hemophilic Factors).  AHF was scheduled properly in time , and I recovered. Karnataka Hemophilia Society, Davangere supported me by providing free AHF during that crisis period. After discharge, I still had headaches and  drowsiness for a month. I was on epileptic drugs for 5 years , and still now I  sometimes  get headache.

In my college days, I never mingled with friends , nor with my family members. I had lot of Psychosocial issues , and  my acceptance level was very low.

KHS ( Karnataka Hemophilia Society , Davangere ) organized youth camp in 2014 at forest near Udupi. I was not interested , but I was forcibly pushed into the bus by my parents. Camp was fantastic, and I made lot of friends. This camp changed my life style, and made me to understand and accept Hemophilia as my friend. From then on , I  learnt to take care of myself. This helped me to start moving forward. I started getting involved with the Society and I  had an opportunity to become youth group president in 2016. I started becoming more active in the social activities. I got involved in organizing welfare activities and also in fund raising activities. These exposures helped me in overcoming my initial fears and helped me to reach out to many. After my education, I was given responsibility of handling the Post of Executive Officer in 2018. Thanks to KHS ( Karnataka Hemophilia Society , Davangere )  for this opportunity to serve the community.

My own personal experience taught me that , when I accepted and moved on , I saw life in a different way. My interaction with persons helped me to understand others who are facing difficulties in life.

My Sincere request to the Public and Hemophilia Community to come forward and get Involved with Society and create awareness about Hemophilia. Let us start advocating with Government, Policy Makers & Stake Holders in involving & getting support from them realizing World Hemophilia Day – 2020  theme – GET INVOLVED….!

We lack only Clotting Protein in Blood

But not Zeal in the Life.

Come Forward , GET INVOLVED , and say YES… ITS POSSIBLE….!

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