When were you diagnosed? What was your first reaction?
I remember it to the day. June 3rd, 2013. Doctors confirmed it at the medical centre and then I went back home and told my family. I had my suspicions, so to a certain extent I had prepared myself. I was of course really sad. But at the same time, I was comforted by the firm belief, deep inside, that all would be well, God willing. In the next few days and weeks I went through all the necessary practical steps to arrange for my UK treatment. At the same time, I started learning more about my illness, so I could handle its symptoms and development.
What did you know, if anything, about this condition?
I was well aware of the basics, because I basically grew up with it, because my father was a patient and then my brother also got sick. I also knew that I had two treatment options-the transplant or taking Tafamidis.
How did your family take it?
They were pretty calm, considering. Of course it was all very distressing for them, but they did not lose faith or hope, but fought by my side. I truly believe that the Good Lord somehow bestows upon us more strength in such kind of trials and we come out winners. This was the case with my family too.
Did you tell anyone else, friends or colleagues?
I did tell my colleagues for practical reasons, so they could replace me at work, as well as a few, close and trusted friends. It was however a matter of time before other friends and acquaintances also got word of it, which was absolutely normal in these cases.
How did they react towards you?
They were loving, compassionate and supportive, financially as well as psychologically, which was perhaps the most important thing. They helped both me and my family in so many practical ways. I will be eternally grateful and always have them in my prayers.
Diagnosis to treatment…How did you feel going through all that?
It was a long, difficult, journey and it’s really hard for me to express that kind of emotion into words. But I will do my best to give you an idea of how my life changed. Following the diagnosis, I travelled to the UK for my treatment, the liver transplant. I rented a house near the hospital and I gradually got to know the warm city of Birmingham and its people. I am really indebted to the Cypriot community of the city, who stayed by my side every step of the way and took to me like I was one of their own and helped me in my daily life and everything I had to face.
That kind of support gave me enormous strength. While waiting for a transplant, I spend my days exercising, biking around the city’s roads and trying to build some sort of a routine away from home, in difficult circumstances. I often went to the Holy Trinity and Apostle Luke churches where I drew great courage from being part of the service. I am so grateful for all the advice, support and spiritual guidance from the priest of the parish that I confided in, as well as the kind words and help from the friends I made at the church.
18 months went by on the transplant waiting list, until I got that precious call from the hospital one night, informing me that a donor had been found and I had to urgently return to the transplant wing and be prepped for the surgical procedure. It was March 31st 2015. I was in surgery the next morning. I woke up many hours later in intensive care with a new liver and a 2nd chance in life. God willing, it all went smoothly. I am eternally grateful to the man who gave me life and his loving family. My God rest his soul in paradise and give strength and courage to his family.
How was the Association founded? What does it offer members?
It was an idea by a support group of close friends, myself and other patients, while in the UK in April 2015 for our treatment. We really can’t thank them enough for standing by us every step of the way. Our Association’s most important victory was securing Tafamidis for patients who are still on the transplant waiting list. The medicine slows down the condition and in many cases actually stabilizes the illness. We are hopeful that Tafamidis as well as future treatments will be included on the state prescriptions list and be available to our patients, right from the time of diagnosis. Our Association stands ready to help patients and their families on everything they might need. We’ll soon be presenting a complete daily programme of support we’ll be providing to patients and their families.
What is your message to people who’ve just been diagnosed? What could you say to their families and friends, their circle of support both at home and the workplace?
I want to send a message of optimism to patients. The condition is difficult for all of us but believe me, things are indeed much more hopeful now. Beyond the transplant option, there is effective medication that will hopefully be approved in the near future and stop the progress of the disease in a painless way. What I ask of everyone else to do, relatives, friends, colleagues, is offer their steadfast support and loving arms to our patients, give them strength to endure the condition and overcome this trial. I ask of them to join their voices and strength with us, so we can achieve a better future for everyone, more so in the most important aspect of our lives, health.
What’s your message to the state and the society you’re living in?
Well, the state has to step up to the plate, take responsibility and improve the living conditions and treatment of all patients in Cyprus. Public health officials must never forget that anyone of us can get sick at any time, that’s life. There are huge capabilities of providing more treatments and medication and the state is totally unjustified in not making them available, as it spends massive amounts in sectors that are far less important to the public. Our country needs to transform into a real welfare state and we must all contribute collectively in making that happen, in achieving what’s fair in the health sector and providing the best possible conditions of treatment and care.