Personal reflections on having a bleeding disorder & my amazing journey!
Tue 25 Jul 2017
Saravana Prasath Gajapathy is a participant in the 2017 Youth Lead Connect program. Saravana believes that sharing his story on Factored In will show youth a different perspective about how life with haemophilia can be in another country.
Now living in Australia, Saravana shares his unique story to connect with youth in the community.
When I was growing up I would almost continuously keep asking myself: ‘How will my bleeding disorder affect my life & prospects? And to be honest with you all, reflecting now, it’s always never been difficult for me to lead a happy and normal life.
In fact, I think that having haemophilia has substantially made me the person I am today!
Surely, it has given me the attitudes and confidence I have now.
Remember that haemophilia is a disorder and not a disease! I believe there is a lot of difference between the two. In my view, we have to be a little cautious and take good care when we have bleeds, and being careful is good, but I think that having a bleeding disorder should not dominate or diminish our desire to have a normal life.
Yes, of course! We are as normal as others, though from time to time we may get a bleed.
We should have this motto in our mind always.
“Yes!!! We are and We can”
My Journey... (which I barely believe myself).
I would like to share with you, my life journey till now. Here it goes….
Now here I am in Sydney, working as a software professional. My journey, all the way from the southern part of India to here, is almost unbelievable to me. I am happy and feel the way I was brought up (to face all challenges) has been a very precious gift!
It gave me confidence, and set me on a path to challenge and persist when I meet any barrier in my life.
GOING TO school with haemophilia in India
Having a son with ‘a bleeding disorder’ meant it was difficult for my parents to get admission for me to a school. No schools in our home town were ready for such a challenge. After a persistent struggle, one school offered admission. This was not so straight forward as they had a condition (only one) - that my mother should accompany me daily. And not just accompany me to and from school, but stay the whole school day! From then on my mother did accompany me to the school, spending her whole day sitting in the corridor.
This continued until the 8th grade - by then I had grown, was trusted more and had many friends, and we all shared the responsibility of ‘looking out’ for me. During my secondary examination, I had a serious psoas muscle bleed. My family and I faced a dilemma, could I even make it to the exams? But I didn’t give up, and my friends came to the fore. They would literally carry me to the exam hall every day, where I managed to sit through the 2 hours of exams.
Going to university and starting my career
The result? I gained admission to a good university! And that meant a new challenge - it was 300km away from my home town. My mother required a lot of convincing, but eventually I gained her permission to take up the place. This was the first time I was going to be away from my parents.
With lots to think about, not least the isolation from the familiar, family and friends. I was strong in my decision. I wanted to get some exposure so I took the hard decision. Now, from my heart I can say that it was the best decision I have ever taken in my life. Since then, I’ve never looked back, so far the days have been golden!
College is where I found myself and it’s the reason why I am here. I had an opportunity to learn and experience this beautiful life. I got a chance to mould myself and develop a positive attitude towards life.
Once again my friends played a vital role, and I reflect upon it and think: did I receive this wonderful support without realising it? I was and am always truly grateful for them and for the real love and bonding.
Finally I got a job as a software engineer. I started my career in the northern part of India and there I met my beloved life partner. She truly loved me for what I am and she continues doing that perfectly still. All went well and we are happily married.
Being part of the Hemophilia Federation (India)
Initially I was referred to a children’s hospital in Chennai for the treatment of my haemophilia, where many of them do not even know or are aware of what haemophilia is!
Luckily, the doctor (I still remember her name) was at least aware of haemophilia! At that time, the doctor guided me to get enrolled in the Hemophilia Federation. They have a lot chapters/branch across India. So at the age of 13, I enrolled myself with Hemophilia Federation chapter in Chennai.
My Hemophilia chapter in Chennai has helped me a lot during hard times by always providing me a great support and guidance in all aspects. I am very grateful that they guided me, accepted me as family and helped me grow mentally and physically throughout my life.
Suddenly, I got an opportunity to travel and work in Australia. It was a big shock and a big shake up for my whole family and friends who had many questions:
How this guy will survive in Australia?
Will he get medicine and support like he gets here in Chennai?
What is the decision he is about to take?
Once again I made a decision to take the opportunity, even with a lot of questions and fear in my mind.
I went to the Chennai chapter and enquired about Haemophilia Foundation New South Wales and the people in Australia. The Hemophilia Federation guided me to become a member in Haemophilia Foundation New South Wales like I was here in Chennai.
Sydney – my new home
Here I am! I have reached Sydney with mixed feelings, missing my circle of friends and family, but also looking forward to making new friends and experiences.
Thankfully, again I have met some great people and formed a supportive group of friends with the same care and love I had back home.
I am also grateful for meeting the social worker at the Haemophilia Treatment Centre who encouraged me to share my journey, my story and recommend that I be involved in the Youth Lead Connect program with Haemophilia Foundation Australia.
Being involved in the Youth Lead Connect program
The Youth Lead Connect program training weekend was held in Melbourne and I participated in leadership and mentoring training while meeting other youth from across Australia, all of whom have bleeding disorders. It was a great experience to meet other young people with bleeding disorders.
I always think that young people should motivate other young people and increase awareness about bleeding disorder. I think it is important to take up challenges and show our will power by staying healthy. The Youth Lead Connect program has helped me to take up the challenge and the opportunity to be more of a leader and mentor in the community. A lot of ideas were shared among us on how to motivate those younger than us.
SP with the youth participants of Youth Lead Connect in early February 2017.
Leadership is all about caring, daring, and sharing! Caring for people, Daring to Act fearlessly, & sharing the success with all!
I am getting a lot of support and encouragement from Haemophilia Foundation New South Wales. They are motivating me to use and develop my leadership skills.
Young people like us need a lot of motivation! I think it is important that us young people ‘give back’ to the community, as the community has given a lot to us and helped us grow, given us more confidence and strength, mentally and physically.
Don’t let anything dull your sparkle
I don’t believe that I am restricted by my haemophilia, but so I can play sports like cricket and badminton, I make sure I take a lot of care of myself and my haemophilia. I don’t want to worry friends and family if I get injured, so I think it is important to be sensible while we’re playing any kind of sport, or while being active so that friends and family don’t need to worry.
Attitude is everything!!! It’s all in our hand and how we mould ourselves by being ourselves.
Don’t ever give up!!!
Be happy and make others happy!