Nagesh K

Nagesh K

India

Story of a Haemophiliac

Dear friends,

Today the 17th of April is World Haemophilia Day (Birthday of Frank Schnabel, a Canadian businessman born with severe haemophilia A and the founder of the World Federation of Haemophilia). So I, being a Person With Haemophilia (PWH), think this is the right time to share my experience with you all. (For those who are not acquainted with Haemophilia: it is a bleeding disorder likely to cause severe joint pains and consequent multiple deformities. The disease is incurable, but manageable under proper medical guidance.)

Son having born after two daughters in a middle-class family in the early 1970s in a small town, I suspect my parents’ face gleamed. But their happiness didn’t last long when they began to face rather unexpected and complicated problems with even my minor bruises within my first couple of years. With medical facilities incomparable with that of today in those days, I was diagnosed as a Person with Haemophilia after several trials. ‘Haemophilia’ was just a name made known to my parents; doctors suggested nothing else, barring the fact that I should be brought up CAREFULLY. None to blame; doctors whom we could reach, themselves knew very little about the ‘Royal Disease’ in those days.

Days went by, and my health deteriorated with it, following several bleeding episodes. By the time I was 14, I lost my walking ability. I would be literally picked up by my friends from the auto-rickshaw to my bench in the classroom. Went to the college in the wheelchair with the assistance of a guy. Spent countless sleepless nights owing to excruciating pain (painkiller was the only treatment I could get then).

Despite these serious setbacks, I never lost interest in my academic studies. I stood first in the class throughout my schooldays. Though I got over 90% in 2nd PUC, I couldn’t join any technical / medical course (I had the wish to become a doctor, though) owing to my extreme physical constraints, and joined the course of B.Sc (PCM). I was selected as a Postal Assistant when I was in the final year B.Sc well before the final exams. Went to Mysuru for postal training for 75 days (my health had improved by then, thanks to my age). Wrote the final B.Sc exams by operating from Mysuru to Arsikere. And finally, my sincere efforts paid off. I made the very Principal of my college, who, worried of my multiple, complex physical disabilities, had first denied to grant me a seat in PUC in the PCMB section, feel extremely proud of me. His college got a rank for the first time, and that too the First rank in B.Sc with a record scoring in the history of Mysore University. Perhaps influenced by this achievement, many ranks were recorded in the history of the college in the succeeding years.

Friends, I’m telling my story not to boast of myself (I’ve nothing to boast of either), but to instil confidence in the minds of fellow haemophiliacs. On introspection, I reckon my achievement is not mine. I owe it to my extremely cooperative friends and school / college staff, both teaching and non-teaching. It was because of them that I could overcome my physical constraints.

Now my family members: my dad, despite having known the fact that my mom was genetically responsible for my disorder and the consequent unending problems in the family, never ever resented on mom or her family. Hats off to him! He catered to my needs till his last breath. My parents and sisters all have stood by my side and have made my life comfortable to the fullest extent possible. Mom has been exceptionally patient in tolerating the pains with me. Can’t repay them at all!

Not to forget my colleagues of all cadre from Group D to Divisional Head. Their extensive support made me serve the Department for 14 years – long enough for my health condition (which had deteriorated by then); long enough to earn my bread. Many thanks to them too!

Lastly, but by no means, the least, Dr Suresh Hanagavadi and Mrs Hanagavadi of Davangere, like in the life of so many PWHs, have come all the way from their workplace to my home despite their busy schedule as well as Dr himself being PWH, and have ameliorated my sufferings. Simply great!

Well, this is my story. Life has changed globally including our nation to a great extent over these years. Awareness regarding the Royal Disease at least among the medical faculty has improved, but not to the extent in developed countries. It is still a long way to go. Facilities for an early diagnose of cases of rare diseases should be made available everywhere including rural areas. People should be educated about dealing with persons born with abnormalities; their support can build up wonderful confidence in the less blessed ones in facing life; I’m very lucky in this regard to get such an environment. And to fellow PWHs, this is what I’d like to say: It is you who have to suffer lifelong if you’re careless. So please lead a cautious lifestyle without venturing into strenuous physical activities. But don’t lose hope in life. Philanthropic achievers like Frank Schnabel and Dr Suresh Hanagavadi should inspire us all.

To conclude, I’d like to quote the lines of the German philosopher Friedrich Nietzsche: Pessimism is a sign of decay, optimism is a sign of superficiality. ‘Tragic Optimism’ is the mood of the strong man who seeks intensity and extent of experience even at the cost of woe, and is delighted to find that strife is the law of life.

May this quote be inspiring to us all in accepting life! Wish you all a bright future!

Regards,
Nagesh K

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Nagesh K

India

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