What it's like to grow up with thalassemia in Cyprus
The 2013 World Conference on Haemoglobinopathies introduced me to lots of people, one of whom is the writer of today's blog post.
Thekla Kyriakou and I met while walking in opposite directions in an outdoor walkway between two conference halls.
I can't remember if I introduced myself to her because I heard her talking about a topic that I was interested in or if I just happened to ask her to join me for the presentation I was about to give.
Regardless, we got along quickly and she had me laughing in seconds.
Thekla is another thalassemia patient who told me that hearing stories like mine have helped her become more <a href="http://josephinebila.com/talk-about-thalassemia/">outspoken about the illness</a>.
I asked Thekla to share her story of life and triumph with my readers, because people feel better about life when they know they're not the only ones going through tough times.
So, without further ado, here is Thekla's blog post:
Good morning world !!! Let me introduce myself. I am Thekla Alecou Kyriakou from Cyprus, the birth island of Venus. Cyprus is a beautiful island in the Mediterranean Sea and it's also a Reference Centre for Thalassemia.
I was born in October 1970. To me every birthday is special, because when I was born I had the misconception that I wouldn't live beyond my teen years.
I am the third child in my family. My brother, who is the eldest, was born healthy.
My sister, Marina, is 4 years older and started having health problems that nobody could understand.
Despite the cost, my father sent my mum to the UK so Marina could get tested for her medical problems.
That's when Marina was diagnosed with thalassemia major.
After that, my parents were tested and found to be positive for the thalassemia trait.
They were advised and referred to TPMH at Akrotiri RAF base (a hospital) for her treatment. There was a high interest in studying thalassemia in the 1960's and 70's.
Doctors were puzzled by this new medical challenge, since <a href="http://josephinebila.com/what-is-thalassemia/">thalassemia</a> proved to be a genetic disorder that was passed from parent to child.
Treating Thalassemia in Cyprus
TPMH welcomed us with open arms and took such good care of us by loving us, helping us accept our medical problems, and supporting us throughout the years.
I believe being a patient there shaped me into the person I am today. The whole environment gave me strength to fight for my life and survive.
I live with my sister and my mother in the country.
I wasn't blessed with a family, but I have my family of dogs (12 is the exact number).
Now this is the point you are thinking "Oh my God, she is mad!!" LOL!!
But to me, my dogs, cats, and chickens are my happiness in life. They remind me daily of how blessed I am to have achieved my dreams and goals of living happily -- planting plants, flowers, and vegetables.
I also get to share my life with my sister and mother -- to me this is an everyday blessing.
It was my lifelong dream to escape the city's noise, get my own land, and live in the fresh air.
I thank God daily for blessing me with this and for allowing my dad's last year of life to be here with us. He was able to have his last breath here in peace.
Working With Thalassemia
I currently have a steady job as an Assistant Clerical Officer at Limassol General Hospital.
The job is fulfilling because I get to help patients arrange their hospital appointments and type their medical reports, etc.
I love being able to see a smile on their faces. They share their health problems with me and we give each other courage and support.
I feel lucky to be able to give back some of the care I was fortunate to receive all my life.
I try my best to perform my job to the best of my abilities and help people as much as I can.
After TPMH closed down, my sister and I started getting our transfusions from the Thalassemia Unit of Limassol General Hospital.
We have the upmost respect for our doctor, Dr. Michael Hadjigabriel, pathologist in charge of the thalassemia unit since its foundation at our town's hospital.
He and his nursing staff are doing an outstanding job of taking good care of us and meeting our needs. The staff continuously educates themselves about Thalassemia and try to give us the best medical care available.
Unfortunately, having the misconception that my life would end around my teenage years led me to drop out of high school, even though I was one of the best students in my class and got all A's.
I started being rebellious, going out all the time, smoking, drinking and partying hard. I was never compliant to my treatments at all.
I was having a free lifestyle and trying to live each day as it was going to be my last.
Turning 18 and not dying, didn't stop me changing my wild ways. I moved away from home
and worked various jobs (waitressing, bartending, and hotel waitressing).
I managed to gain my independence and was still enjoying life to its fullest.
Unfortunately, that came to an end at the age of 26 when I was diagnosed with acute heart failure due to the fact that I was never compliant with my chelation treatment.
I spent a week each month for 13 months continuously getting chelation through the vain.
It was a difficult year, as my dad also had a massive stroke and I had to take care of the family as well.
That experience matured me and drove me to search for another profession, because I was not able to waitress anymore.
I went back to evening high school for 4 years and obtained my diploma (grade 19 out of 20).
At the same time I took all the necessary tests (accounting, typing, computer certificates) and after a long struggle, I was employed by the Cypurs Government as an Assistant Clerical Officer.
Being born with thalassemia taught me courage, patience, and an undying will to survive and make the most of this short human life we are blessed with.
I've been through a lot: surgeries (spleen, appendix, eye surgery, gallbladder) heart failure, I am diabetic, and I have osteoporosis.
Despite everything, I am still here as a living example that Thalassemia is not a deathly disease, but a chronic health condition.
If patients get treated well, and have the appropriate care, they can have rewarding, fulfilling lives, become active, and contribute to society.
Each person and case is unique, regardless of the fact that we share the same condition.
We are all unique individual humans, but we all must be strong and fight for a full life and accept our condition and love ourselves.
I hope sharing my story can be an example to other patients, parents, and friends.
If you want, please support my page on Facebook which is called: “Thalassemia Patients, Family and Friends” and stay in touch.
I'd loved to hear from all of you in the comments below and I wish you all the best. But above all health, love and happiness in you, your family, and friends.
Bye for now. Stay healthy!!!
Thank you, Thekla for sharing your journey with us!
This post originally appeared on josephinebila.com on Tue, 09 Jun 2015.