“My family is from Greece originally but I was born and grew up in Wales, a country which even today has very few thalassaemia patients. When I was born 38 years ago, nobody – including my family – had any idea what was in store. I was eventually diagnosed with beta thalassaemia major at the age of two, after a lot of ‘trial and error’ trips to the doctor. It was quite a shock for my parents; treatment was nothing like as advanced as it is today, people were still dying very young and to get a diagnosis of thalassaemia was devastating.
Luckily for me, my family lived close to Cardiff which has a large, modern hospital. Today, Cardiff is still the only hospital in Wales that treats thalassaemia patients – there aren’t many of us ‘thalleys’ in the valleys! When I was younger, I used to stay overnight in hospital to have my transfusions and my mum always used to stay with me.
One vivid memory from when I was a child is when I was about eight years old, a nurse was attempting to put up a unit of blood for me when she accidentally pierced through the actual plastic of the bag and blood started running everywhere! Looking back, I suppose she was worried about getting into trouble for wasting the blood because she actually got out a sticking plaster and tried to patch it up.
My mum, however, was having none of it and she wouldn’t let her bring the compromised blood anywhere near me. I still think about it and I am glad my mum stuck to her guns, but it just shows you what could have happened if she hadn’t been with me. I get on very well with the doctors and nurses in Cardiff, they are a great team and very dedicated. I appreciate everything they do to keep me as fit as I can be.
Of course, it helps that thalassaemia treatment has improved greatly over the years; oral chelating medicines have made life so much easier and transfusions are quicker and easier than they used to be. In fact, I have a great deal more than that for which to thank my mum. She was always very encouraging when I was young.
Like a lot of young boys, I was very keen on sports and mum never tried to put me off – her attitude was always ‘try it and see how you get on’. I played most sports as a youngster and to this day my favourite hobby is playing roller hockey; I play for my team which is the Cardiff Bay Crossbones. As anyone who has seen any kind of hockey on TV will know, it is a very physical game and not for the faint-hearted. Thalassaemia is left behind in the dressing room and, believe me, I give as good as I get!
When I’m not playing roller hockey, planning or having tattoos, I love watching films and spending time with my family – especially if it involves enjoying my mum’s Greek cooking. Family is the most important thing in the world to me and the other person who has been a major influence in my life and has given me tremendous support over the years is my sister Sofia.
As for my career, I do cost administration for a civil engineering company. The job suits me very well and I really appreciate my employers’ understanding in allowing me to take the day off when I need a transfusion. My team mates, friends and colleagues know I have thalassaemia, but I don’t see it as the most important thing about me or make an issue of it and nor does anyone else.
All in all, I have a good life, and I am going to keep on being myself and enjoying life for many years to come!”