REEM GHAZZAL
Patient Advocate
OUR BODY AS AN ENGINE
Our body is like an engine. Each of us has only one and it is our duty to be careful with it so that it lasts a lifetime and takes us as far as possible. We don’t all have the same engine, some engines need special „care“, others are limited in their performance and still others have a shorter lifespan.
History
Thalassemia or colloquially „Mediterranean anemia“ is a disease in which the bone marrow produces hemoglobin with a shorter lifespan due to a genetic defect (the absence of one of two globin chains). The normal lifespan of red blood cells is approximately 120 days. In us thalassaemics, due to the „error“, it is barely half that. This is why our bone marrow works at full speed to keep up with production. We feel the deficiency very intensely, as the main task of haemoglobin is to transport oxygen. In the worst case, this disease can even be fatal. To prevent this and relieve the bone marrow, we need blood transfusions every 2 – 3 weeks. This in turn introduces a large amount of iron into our body. The iron has to be excreted again through heavy medication and so the vicious circle begins.
My family found out about my illness when I was three years old. They didn’t know how to deal with it at first, but I soon started receiving transfusions and a drug to excrete iron. Back then you had to inject the medication under the skin, nowadays there are also tablets.
I could think about was how unfair the whole thing was! It was all so painful for me. I wished I could do something to make it all stop! Not just for myself, but for everyone with thalassaemia.
No one deserves such a fate! I felt very lonely as I couldn’t talk to any of my friends about it, but my parents did everything they could to make sure I didn’t miss anything at school and could stay on the ball. I started seeing a cardiologist regularly. At first we thought it was routine, which was part of the illness, but it turned out that I had another condition and would soon need heart surgery.
It caused me great sorrow to realize that life always had more surprises in store. Just when you think it’s hard enough. Despite everything, somehow I kept going, I concentrated on school and thought to myself 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 having to admit to myself that I was often tired and exhausted.
My mother told me I should keep it a secret from my friends because they might react negatively or feel sorry for me. That made me very lonely. I asked myself why I had friends if I couldn’t share the biggest burden on my shoulders with them! 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 an inner attitude!
I was always one of the best in my class. I was also very popular because I could show more empathy for others than my classmates. When I finished school, I enrolled at university. I started my first semester of electrical engineering full of enthusiasm. I enjoyed it immensely, especially math. I realized that learning made my mind and creativity grow, also 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 thalassaemic, was killed, although he had nothing to do with politics. Life came back in its full force.
Shortly afterwards, I found out that I urgently needed a new heart valve. However, the circumstances in Syria were more than bad. My father tried everything to get us to Germany and he succeeded. It wasn’t an easy operation, but it worked! I now have a new heart valve that will last about 15 years. I decided against an artificial heart valve because otherwise I wouldn’t be able to have children.
I would like to continue my studies here in Germany. I know many people would now say that I don’t have to do that because I’ve already been through enough and don’t have to prove anything to anyone. But I’m going to keep going, because I’m only at the beginning! I still have so much to do in my life, even if my abilities are „limited“. I know that everyone has their own worries and fears and I always try to help where I can.
I am aware that it is very difficult, because unfortunately you can’t reach everyone, but in my eyes it is not a heroic deed to help. It just takes a lot of courage and hard work.
I wish DEGETHA the strength to reach as many thalassaemics as possible and to help them in any way that is necessary.
DEGETHA itself is largely made up of those affected and they know best what we need. It should give everyone hope and show them that nothing can stop us. My illness makes me proud, because it has taught me how wonderful it is to help others.
