By Jihan Anwar
Photo by The Yemeni Society for Thalassemia and Genetic Blood Disorders
Mohammed Mulhi, has recently graduated from the English translation department, and considering his condition, is it a testament to his commitment and dedication despite a serious health condition. As a thalassemia patient, Mulhi says “As you need air and food, for us [thalassemia patients] blood transfusions and medicines are essential.”
Thalassemia is a group of inherited diseases of the blood that affect a person’s ability to produce hemoglobin, resulting in anemia. Regular blood transfusion are needed to treat the illness, yet the iron build up that results from it, is what often causes heart attacks, irregular heartbeats and heart failure in the patients. Brittle and weak bones as well as an enlarged spleen prevent people with thalassemia to lead normal lives.
In its most severe form, thalassemia causes patients to die in their childhood. This happens particularly in Yemen because parents are not familiar with the disease. What is an ulterior problem is that some doctors misdiagnose the symptoms of children with thalassemia, advising the parents to simply give them more vitamins instead of treating the patients with blood transfusions.
On the occasion of the International Day for Thalassemia on May 8th, The Yemeni Society for Thalassemia and Genetic Blood Disorders organized an awareness event to pressurize the government into legalizing a law that would make pre-marital blood tests obligatory. The Society appealed to Dr. Ahmed Qasem al Anesi, Minister of Health and Population, to include the blood tests as a condition for the validation of the marriage.
“The Ministry of Health has requested us to prepare a plan of action for the Ministry of Justice, which we did months ago but they are still slow in taking any action saying instead that the House of Representatives has yet to decide on its approval,” says Dr. Abdullah AlTaya, a specialist in children with hereditary blood diseases.
He believes that cultural ideologies and lack of real comprehension about the need of the tests is the main reason for which the government isn’t taking prompt measure to help prevent thalassemia cases from increasing even further.
“There are professor abroad that are thalassemia patient; they are cared and provided for. Here in Yemen wneed to beg the government to provide us the basic 120,000YER (about 558USD) to supply the patients with medical devices,” says Dr. alTayar.
Most of the Arab countries, including the Saudi Arabia, have already made the blood test obligatory. In America, if pre-marital blood tests are not run, health insurance is revoked for the couple.
Blood tests are instrumental in predicting the possibility of the occurrence of inherited blood disease in the children. Thalassemia appears when both parents are carriers of a defective hemoglobin gene, the oxygen carrying protein in red blood cells-RBC, causing excessive destruction of RBCs.
Bone marrow transplant could be a cure, but such an operation it’s not available in Yemen and the costs, 50,000 USD for the treatment, are prohibitive for the majority of Yemeni thalassemia patients. In fact, Dr. alTayar explains that many families living in rural areas or far from the Sana’a governorate, cannot even afford to bring their children to the capital for treatment. “We have opened centers in Aden and Taiz because of this.” It is believed that the statistics of about 2,500 thalassemia and anemia cases in Yemen from different governorates are just the tips of the iceberg as the majority of people are still unaware of what inhered blood disease are.”
Among people who have thalassemias, infections are a key cause of illness and the second most common cause of death. People who have had their spleens removed are at even higher risk because they no longer have this infection-fighting organ.
Many people who have thalassemia have bone problems, including osteoporosis bones are weak and brittle and break. enlarged liver and spleen.