February 7, 2014.
How are you? It is my hope that you are well. I am writing this letter with some news about my dear son, Fortuny. He has not been at the best of his health since we left home for the US. He has been complaining of various complications, which, at first, did not seem serious to us until recently, when he started getting ill more often. Fortuny would often complain of fatigue, and yet there were no other symptoms. Some other times, he would exhibit breadth shortness, which was so scaring. We were getting more concerned when he started developing anemic complications and chest pains. By then, dizziness and headaches had become his frequent complaints. Since Fortuny seemed normal for most of his time, it took us about ten months to identify the disease that he was actually suffering from.
I had never heard about thalassemia until doctor singled out some signs, for which he concluded that the test was necessary. Indeed, the doctor confirmed that our son was experiencing a mild anemia. This was revealed by a blood test that showed small and abnormally shaped red blood cells. After recording the diseases history, the doctor warned that it was not normal that, at most of the times, Fortuny used to take a longer time to heal as compared to his age mates. When the doctor took a physical test, he noted that Fortunys spleen was swollen. He then ordered for hemoglobin electrophoresis test, which showed an abnormal form of hemoglobin in my sons blood.
Fortuny has been diagnosed with alpha thalassemia, which is a hereditary blood disorder. The disorder causes the body to produce fewer healthy red blood cells and less than normal hemoglobin (Vanichsetaku 113). The disorder was discovered in1925 by Dr. Thomas Cooley, who observed it in patients from the Mediterranean. He named it Cooley anemia. However, the condition was recognized as a genetic disease in 1938, and it was renamed as thalassemia, which means sea in the blood (Who Discovered Thalassemia?). Thalassemia is actually a group of diseases, of which alpha thalassemia is one of the two main types. Alpha thalassemia is a condition whereby ones body is not able to make enough alpha globin protein chains. Normally, a person needs four Alpha-related genes (two from each parent) to produce enough alpha globin protein chains, and if one or more genes are missing, then the person has thalassemia (Alpha Thalassemia). Alpha thalassemia varies from silent, where only one gene is missing, to hemoglobin H disease, where three genes are missing. If all of the genes are absent, though this is rare, babies die before or immediately after birth. As for Fortuny, he was diagnosed with alpha thalassemia minor, which occurs when two alpha-related genes are missing. Thalassemia leads to anemia, heart, and liver diseases, and often requires regular blood transfusion. The disorder also affects the spleen and bones.
The photos below show a boy suffering from thalassemia:
The main Treatment of thalassemia is transfusion of red blood cells (Vanichsetaku 113), which is mainly recommended to patients with moderate to severe thalassemia. However, for people with mild to no symptoms, little or no treatment is necessary; nevertheless, doctors often recommend an intake of iron. The good news is that Fortunys condition will not be hard to treat. The doctor recommended that taking iron medication would be a sufficient treatment. Unlike severe thalassemia, which often leads to early deaths as a result of heart failure, the doctor informed us that mild thalassemia, like one that Fortuny has, rarely shortens the patients lifespan (Thalassemia). We have to keep him at close doctors inspection for ease of detecting any complication that may develop. I feel so happy knowing that my son will be able to have a normal life soon, after the treatment.
Since thalassemia is genetic, with a 25% chance of occurring, I would recommend all our family members to undergo a screening as soon as possible, to determine our status. This will be a good precaution, especially to my sisters, who are yet to get married, as they will be in a position to know their status and take the necessary actions. Give my love to dad, Joy, and Winnie.
Alpha Thalassemia. Newborn screening. Screening, Research and Research in Genetics (STAR-G), 30 11 2012. Web. 7 Feb. 2014.
Preeda. Thalassemia: Detection, Management, Prevention, and Curative Treatment. The Bangkok Medical Journal (2011): 113-118. Print
Thalassemia. New York Times. N.p., 02 07 2012. Web. 7 Feb. 2014.
Who Discovered Thalassemia? Yokozima. N.p.. Web. 7 Feb. 2014.