EVGENIOS KYRIAKOU

ASSOCIATION PRESIDENT

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.

DIMITRIS GENETHLI

ASSOCIATION SECRETARY

When were you diagnosed?

It was May 2013, when I was just 21. Symptoms started 2.5 years earlier when I was serving in the National Guard.

What did you know about the condition?

Τhe diagnosis merely confirmed my suspicions and insistence. We knew about the condition as my grandmother was the first case in our family, seven years back. We also knew that a liver transplant was necessary. There was a delay in the diagnosis, mainly due to my age but also the fact that many doctors could not recognise the symptoms as they were not aware of the condition.

How did you react to the diagnosis?

I was relieved at first, because it could have been much worse. I have to be honest there are always people who are worse off than us. In time however, I realized how dangerous the disease could become, as well as the risks of treatment, including the transplant. I went through a period of depression, but I was lucky enough to have the Grace of God by my side through people that stood by me patiently and helped me overcome these difficult times.

How did your family react to the diagnosis?

Well in the first few days my family and friends were understandably upset, disappointed and also in the dark as to the real progression of this condition. Fortunately, they got over these emotions soon and together we managed to deal with the problem in the best way possible.

From diagnosis to treatment

I can’t deny that in the first few days following the diagnosis, I questioned myself about whether I should go ahead with the transplant, I was really afraid of the risks. This changed when I started meeting patients with the same condition who had undergone this treatment. I realized that this procedure was no more than routine. It did pose certain risks for sure, but it was necessary to prevent the condition from worsening.

How was the Association created?

There was a need to coordinate the patients, organise as them as a group. Many of them were not aware of many issues concerning the condition, as well as many other aspects of their daily lives. If they were under the umbrella of an Association, it might have made both the patients’ and their families lives much easier. These were some of the reasons that made an Association necessary, but what really drove us to speed up the process of founding the group and join forces, was the Vyndaqel-Tafamidis medicine.

I was diagnosed at the same time as four other patients. During that time, Dr.Theodoros Kyriakides our specialist neurologist at the Institute of Neurology and Genetics, informed us of the availability of Tafamidis that was approved by the European Medicines Agency back in 2011 for patients with TTR-Met30. We were told it was particularly effective during the first stage of the condition, before the liver transplant. This was the stage we all found ourselves in, when diagnosed. The state however refused to provide Tafamidis, claiming that it wasn’t really effective. While in the UK for tests and waiting for a transplant donor, we did our own research, reading relevant studies and publications on Tafamidis. We realized that the drug was highly effective and really precise in slowing down the progression of the illness, until the day of the liver transplant. We even found out the certain patients abroad avoided the transplant by taking Tafamidis. I was lucky enough to find a donor first, out of the five patients that were diagnosed with me, so I returned to Cyprus before the others, in May 2014. I left the UK with a heavy heart, as the other four were of a rare blood group and could not easily find a donor. This was the trigger for me to get patients organised and as I soon as I got back, I contacted two people who had patients in their families and along with the patients still in the UK, we set up a TTR-Met 30 patient support group. Four other patients were also diagnosed at the time.

We really pushed forward in getting Tafamidis approved by the state and made immediately available to patients, or at least those on the waiting list.  It was in the mean time confirmed, that the reason for the state refusing to provide the drug, was purely financial. As it’s well known, we managed to get Tafamidis approved in Cyprus and provided to patients on the waiting list. But it was only half way. The medicine has yet to be included in the health ministry’s prescription list due to cost. This is quite frustrating, but we’re also more determined than ever to fight this. Tafamidis can only be taken before the liver transplant, so as patients who’ve already had the surgery, we have nothing to gain at a personal level. Our only goal is to help the next group patients, spare them from irreparable physical damage and disabilities like many of us had to suffer.

What’s your message to people who’ve just been diagnosed, their families and friends?

To new patients but also people who know they will be diagnosed, due to hereditary reasons, I want to send a message of unity. I assure them we can change a great deal through the Association.

One of them is Vyndael-Tafamidis and our fight to include it on the states’ prescription list. In addition, new medicines are evolving, new kinds of treatments and methods that are quite effective and hold a lot of promise for the future. We must support and believe in our Association to secure a better future. With the virtues of unity and patience, God will lead us to the best possible result.

Social awareness of the illness is improving and we are touched by people who recognise the value of real health and turn into a beacon of hope for the patients. Everyone has their own cross to bear, but we are obliged to support each other in order to overcome the difficulties. The state must now rise to the occasion and support people who are in need. Patients can no longer be sacrificed for the sake of money and the primary consideration should be healthy people, who can contribute to society.