"No one wanted to have a friend with thin limbs, a bulging belly, a waxy face." The moving story of Kyriakos

ImageHandler Human, Thalassemia, Kyriakos

Today is World Thalassemia Day

Η 8th of May has been established by the World Health Organization and the World Thalassemia Organization as World Thalassemia Day (Mediterranean Anemia). It aims to awaken and encourage scientists around the world to better treat the disease, as well as to raise public awareness about the problems of thalassaemias and the effort required for the safety and adequacy of blood.

The term Thalassemia includes a group of inherited abnormalities that result in a reduction in the synthesis of one or more of the hemoglobin molecule polypeptide chains. Thus, a person suffering from thalassemia (Mediterranean anemia) needs regular blood transfusions (when he has inherited two abnormal allelic genes) to maintain normal levels of hemoglobin in his body and not to suffer from redness, which is harmful to his body. However, this treatment causes hemodialysis (increase in iron), which can prove fatal if not treated in time. There is also the case that a person is a carrier of the disease, when he has inherited an allelic gene. Then we say, wrongly, that he has the stigma of Mediterranean anemia.

The first detailed description of the disease was given to people of Mediterranean descent by the American pediatrician Thomas Benton Cooley in 1925. Hence the names Thalassemia or Mediterranean Anemia.

In Cyprus, 650 people with thalassemia regularly need blood. The needs are great and can exceed 30 units of blood per person per year. This is another reason for the increase in blood donation in our country.

A man with thalassemia talks about everything that hurts him…

Kyriakos Ioakeim reports in ant1iwo:

"I was born in 1958 in Achna, I lived for many years in Limassol and in recent years I have lived in Larnaca. I went through very difficult and poor years, of course, the worst thing was that I had to deal with my illness as well. I suffer from Thalassemia or Mediterranean Anemia and I felt like I was the object of racism for several years.

I felt very bad because from a young age they looked at me strangely and no one approached me. No one wanted to have a friend with thin limbs, a bulging belly, a waxy face and colorless lips. I heard very harsh conversations from many people who never cared about my soul and my emotions, except about my appearance. I was in a lot of pain inside me and with me and my mother. She cried every time she heard something bad said about me. I could not bear to see her bitter and I hid so that she would not see me crying. I felt  as if I were a miasma, the curse within the family. I was saying to myself: "Why do most people not want sick children? Why want only those who are well? "Since no child is to blame for being born ill."  

I also experienced intense racism at school…

Most of the kids were very hard on me, calling me "yellow" and laughing. All this was the reason for me not to have any self-esteem and to feel inferior to others. I always had the fear of failure and rejection inside me. Few were those who took me by the hand and offered me love, with their beautiful words lifted me high. I say "thank you" and let so many years have passed.

  I remember everyone saying that I was not going to live more than 18 years. I heard them say: "The poor child is not going to live long yet, until the age of 18." But I was sure that I would live much longer and I was not scared by the feeling of death. Every time I closed my eyes and dreamed of the future, I would say in a loud voice, "All I see is life, more life, and death will come in my old age."

The Pancyprian Antianemic Association changed our lives…

Around 1970, parents and friends of people with Thalassemia, founded the PAS (Pancyprian Antianemic Association). Their first concern was to find blood which was terribly difficult then but also to inform the world. The PAS, together with all the Thalassaemics and their parents, work together, like a fist to keep the sufferers alive and get out of obscurity since then, almost all of us saw us as an unnecessary way out. They said that after we die at 15, then they did it 20 and later until 25. But we managed to live and be educated…

 Those who are now over 40-45 years old, have managed to become scientists and active members of our society. We managed to make our own families and most of them live blessedly with their children.

My life has always been full…

Pain, crying, anger, pessimism, suffering - Blood transfusion for life and daily long-term subcutaneous injection of desferrioxamine are not at all pleasant situations; but in the end joy and pride, it is full of the sheet of my life that I folded and kept deep in my soul. But today, I want to send my own messages…

Thalassaemics should never be indifferent to their Therapeutic Education no matter how painful it is. Let everyone come close to the Association and all together, strong like a fist, to win and show that we are not different but we deserve the same as all other people. The state must provide all the patients and not selectively the medication and especially the iron deprivation medicine that they deprive us of because it is expensive. 

 For the PAS and the provincial associations, I wish the best. I know and I am glad to see how lovingly they work and support the sick and that their concern is our well-being.

 But I want to say a big thank you to the people who have been by our side for so many years and support us, to the blood donors who give a unit of blood and we get a unit of life…

I thank our doctors, over time, as well as our nurses for their love and understanding. A big thank you from the depths of my soul! "          

The everythingof the Pancyprian Antianemic Association… 

 

The president of the Pancyprian Antianemic Association, sir  Miltos Miltiadous, reports in ant1iwo: 

"The vision of the Pancyprian Antianemic Association is to make Thalassemia Centers modern, based on the standards and provisions created today by specialized Thalassemia Centers around the world and to be provided to the latest thalassaemic, high quality and specialized diagnosis, monitoring and care. To institutionalize and systematize a plan for dealing with emergencies or difficult incidents, which anticipates the extreme cases that we are facing more and more. 

Our vision is for every thalassaemic to have the opportunity to receive the treatment that ensures the best results and the best possible quality of life and to create in Cyprus a targeted social policy towards thalassaemics. A social policy that will take into account the peculiarities of the disease, its multiorgan and degenerative nature but also the conditions that the thalassaemics had to face in the previous decades ".

 

Source: ant1iwo.com