Five people share their thoughts on living well with thalassemia in Turkey
Thank you to our friends from the Thalassemia association of Izmir, Turkey for their words of wisdom and for our lovely friend Sachiko for bringing us together.
Josephine: Please introduce yourself.
Mert: I am Mert Sertkaya, male, 29 years old, and I am the chairman of the Thalassemia association of Izmir, Turkey. I work as a secretary at a car-repairing company.
Ebru: I am Ebru Candar, female, 28 years old. I am a nursing student now, doing my course in a clinic.
Sevgi: I am Sevgi Aka, female, 29 years old, working in the service division at Airport.
Ömer: My name is Ömer Canbaz. I am a 38 year old man, and I was the head of the Thalassemia association of Izmir, before Mert took the position. I work as an accountant at a hospital.
Eray: My name is Eray Avara, male, 25 years old, and I have been working in the City Council for about 2 years.
What was it like growing up with Thalassemia in Turkey?
Mert: The Turkish government provides all the necessary medical treatments for people with Thalassemia and also the government supports us to find a job. About 10 years ago, when Omar was the Chairman of this association, there were many problems to solve, for example, to secure the provision of blood transfusion services, or to ensure the transition from pediatric care to adult medical care for grown up people with Thalassemia. However, now our association does not have many things to do, because we have good medical doctors, hospitals, and medical services in Izmir. We try to work for other areas in Turkey, where local support has not been developed fully enough. Sometimes we help foreign countries too. I sent Exjade to Nepal the other day.
Do people in Turkey donate blood regularly or do you have to find your own donor?
Mert: In Turkey, people donate blood. The Turkish Ministry of Health controls the blood banking and transfusion system, and the Turkish Red Crescent has 12 regional blood centers and blood collection unit in 43 cities. If nobody donates blood, we cannot stay alive, so we appreciate the donors very much.
What type of chelation do you use?
Ebru, Ömer, Eray: We use Desferal.
Sevgi: I had been taking Exjade, but because it caused a stomach problem, I started using Desferal again, 5 days a week.
Mert: Recently it has been becoming more popular for people with Thalassemia to use tablets such as Exjade or Ferriprox in Turkey.
Do you have any brothers and sisters? Do they have thalassemia?
Mert: I have one brother and one sister, and neither of them has Thalassemia major.
Eray: I have two brothers with Thalassemia minor.
Ebru: We are three sisters, and I am the only one who has Thalassemia major.
Sevgi: I have a brother who is healthy.
Ömer: I do not have any brothers or sisters, I am an only child.
How did your family treat you as you were growing up, compared to your siblings or the other children with thalassemia in your clinic?
Sevgi: Oh, my parents were very kind and thoughtful. They never treated me differently in our family.
Ebru: My family is the same. They even love me more because of my illness.
Mert: My parents always respect me more as their eldest son.
Eray: Yes I agree, usually family members are supportive in Turkey.
Mert: When we get 15 or 16 years old, we start going to the clinics for blood transfusion and medical treatments by ourselves.
Eray: Yes, we learnt how to manage the necessary therapies by the age of 15 or 16.
What type of challenges did you face in school?
Mert: Sometimes I had to face physical problems, as other children with Thalassemia major might experience. The delay of physical growth might have been a little difficult for us during puberty.
Sevgi: I had to be absent from the school when I had blood transfusion, and catching up the study was difficult. At primary school, I told my teacher and classmates why I had to be away from the school. Teachers and classmates took a note for me when I was not there. They understood my situation and supported me very much. However, at middle school, I did not tell some of my teachers about blood transfusion. I was not able to receive support from them, and fell behind my class in these subjects. It was hard.
How was the sports class? Did you have any problem?
Sevgi: I usually joined the sports class. The teachers did not push me to try too hard, so it was OK.
Ebru: Yes, when I did not feel like exercising, I just skipped the class!
How did you find your job?
Mert: In Turkey, the Administration of Disabled People supports people with Thalassemia to find a job, depending on the person’s education and skills. Less physically tasked jobs can be recommended for us.
Sevgi: I chose my job by myself. I took two exams, and successfully got the job in the Airport, which I always wanted.
Ebru: I wanted to become a nurse, so now I am happy to be able to study in the clinical course for nurse aids.
How do you manage working and going to the hospital?
Ömer: I have a blood transfusion once every three weeks. I always take a paid leave for a day or half a day. People there know why I am absent, and someone can do my work for me during my leave.
Eray: Some of the people with Thalassemia do not explain about their illness to colleagues, but at least, we have to tell our boss. Unless doing so, we cannot take a paid leave for blood transfusion.
Do people at work know about Thalassemia?
Eray: No, not usually, but in my case, they gradually got to know about Thalassemia, and showed their respect to me with their understanding attitude.
Do you want to have a marriage partner? Do you want to have children?
Mert: I always wanted to have a good marriage partner, but not children. I am happy to be engaged with a girl with Thalassemia major now.
Eray: I have a fiancee too. She is also with Thalassemia. Well, I hope I can have a baby too.
Sevgi: If it is my destiny, I can find a good person for marriage.
Ebru: I think so too.
Sevgi: But having a baby is not very important for me.
Ömer: I am single, and I am happy to be living with my parents. This is a nice lifestyle too, I suppose.
Tell us how you stay positive and move forward to achieve your goals.
Sevgi: I always wanted to find a good job, and I did. I am happy with my life now.
Eray: Yes, finding a good job was a goal which I have achieved.
Ömer: Do not think too much!
Ebru, Sevgi, Eray: That’s right! Don’t worry too much. Life goes on!
If you could give advice to someone in India, Afghanistan, Iran or Pakistan about how to achieve the wonderful things you have achieved what would you say?
Mert: I would like to say, please go to the hospital and keep taking necessary medication for yourself.
Ömer: But don’t worry too much, in order not to get tired of your own life!
Thank you again for sharing your experiences and helping us see that we’re not alone.
We are better when we come together in sharing.
This post originally appeared on josephinebila.com on Mon, 04 Jul 2016.