Our body, the motor
Our body is like a motor. Each one of us has only one. It is our duty to deal with it cautiously so it can last a lifetime and bring us as far as possible. We do not all have the same engine. Some engines need special "care," while others are limited in their performance, and still others have a shorter life.
Thalassemia, colloquially "Mediterranean anemia," is a hereditary disease that causes the bone marrow to produce defective hemoglobin. These red blood cells have a shorter lifespan due to their genetic defect (i.e., the absence of one of 2 globin chains). The normal lifespan of a red blood cell is approximately 120 days. When these cells do not form properly, the bone marrow works in high-speed -- to increase production. We feel the deficiency very intensely, since the main task of the hemoglobin is to transport oxygen. In worst case scenarios, this condition can be fatal. In order to prevent death and relieve the bone marrow from overproduction, thalassemia patients require blood transfusions every 2-3 weeks. This, in turn, causes a large quantity of iron to build in our bodies. The iron has to be excreted by heavy drugs, and so begins the devil's circle.
My family learned about my illness when I was three years old. They did not know how to deal with it at first. I began to get transfusions very soon and also began a drug for iron excretion. At that time one had to inject the drug under the skin. Nowadays, there are also tablets to remove excess iron.
The only thing I could think of was how unfair the whole thing is! It was all so painful to me. I wish I could do something to stop it! Not just for myself, but for every thalassemic. Nobody deserves such a fate! I felt very lonely, because I could not talk to my friends about it. My parents did everything they could, but I could not stay in school. I began to visit a cardiologist regularly for heart complications. At first we thought it was the result of having thalassemia. Unfortunately, it turned out that I had one more problem and soon needed a heart surgery.
It gave me great pain to realize that life always had more surprises in store, just when you think it's hard enough. In spite of everything, I went on somehow. I concentrated on school and thought no matter how hard it is, I only have this one life and I will try to make the best of it! What I hated most was that I was often tired and exhausted.
My mother told me I should keep it a secret from my friends, because they could possibly react or pity me. That made me very lonely. I wondered why I have friends if I could not share the biggest load that sits on my shoulders! Over time, I learned to rely on myself. I understood that I could do almost anything like a "healthy" person, because weakness has a lot to do with inner attitude!
I was always one of the best in my class. I was also very popular, because I could have more empathy for others than my classmates. When I finished school I enrolled in university. My first semester of electrical engineering began with enthusiasm. It gave me tremendous fun, especially mathematics, which I liked very much. I realized that by learning, my spirit and my creativity grew -- even in other areas. Then the civil war broke out in Syria. War, as anyone can imagine, is absolute hell on earth. One of my closest friends, who was also a thalassemic, was killed. He had nothing to do with politics. Life came to its full severity.
Shortly after, I learned that I needed a new heart valve urgently. However, the situation in Syria grew worse. My father tried everything to get us to Germany and he managed it. It was not an easy operation, but it worked! I now have a new heart valve that will last for 15 years. I decided against an artificial heart valve, since I can not have any children.
I would like to continue my studies here in Germany. I know many people would now say I do not have to do that, because I've already gone through enough and don’t have to prove anything to anyone. But I will continue, for I am only beginning! I still have so much areas of my life where my skills are "limited.” I know that every person has their own worries and anxieties and I always try to help where I can.
I am aware of the fact that helping everyone is very difficult because unfortunately, you can not reach everyone. But in my eyes, helping is not a heroic deed. Helping, instead, requires a lot of courage and hard work.
I wish DEGETHA the strength to reach as many thalassemics as possible. I also wish to help them in every way that is necessary.
DEGETHA itself consists largely of patients who know best about what the community is missing. We aim to create hope and show others that nothing can stop us. My illness makes me proud, because I learned how nice it is to help others.