20 October 2007

Dealing with Thalassemia

January 13 – January 26, 2007
Issue 14

When Dr. Elsadig Kazzam, Senior Consultant Cardiologist and Associate Professor in UAEU-Faculty of Medicine, did his research about the human heart, he saw that a certain blood disorder could affect it and lead to more fatal problems. So he talked to some of his colleagues who also happen to be interested with the infection, considering it not only as scientific research problem, but as a public problem as well. Their curiosity and willingness to improve the quality of life inspired them form a group, chaired by Dr. Kazzam, which will help combat the disease.

“We are building a society now, the Thalassemia Research and Working Group. This group would try to work with the patients in Al Ain. Our working group is going to check on the four aspects of thalassemia, while the research group, in his or her own specialties, will be doing researches on this,” said Dr. Kazzam. “Now, we are currently looking on the effect of thalassemia on heart. Usually, there are two reasons why a patient dies because of his or her heart: because of heart failure or abnormalities. The latter can be brought by the blood transfusions a person with thalassemia needs to have, as the extra iron can accumulate in the heart leading to iron overload,” he added.

Thalassemia is a condition that occurs when the proteins in the hemoglobin is altered or mutated. This happens when one or more of the genes – the alpha or the beta hemoglobin chain – fail to produce protein. It has two types: the thalassemia minor, which is a situation where only one of the genes is not working, and the thalassemia major, which is a situation where genes fail completely. Thalassemia minor is less severe than thalassemia major.

Among the objectives of the group are to have a Patient Care Officer that will give their patients the best possible treatment and follow up on them; have a Family Support Officer who will assure, comfort, advise and give psychological and moral support to the patients’ families whenever they need help; and make a ‘thalassemia register’ in Al Ain and Abu Dhabi that will contain information on all patients such as their name, age, social condition, and others. “But it will be keep anonymous so that only the people involved will know about it. This will be useful for the government, patients, relatives and researchers,” said Dr. Kazzam.

“We also like to increase public awareness and community service. We will have symposiums and lectures, and orient the families, societies, communities, women associations and patients associations. We would also organized highly specialised courses where we would invite national and international experts to deal and discuss the problem of thalassemia.”

The Thalassemia Research and Working Group is composed of hematologists, cardiologists, psychologists, scientists, x-ray technicians, and members of the UAEU-Faculty of Information. It also contacts from the United Kingdom. “I hope that when this group establishes itself, it will be a Thalassemia Society in Al Ain or in Abu Dhabi. After we ascertain this, we will coordinate with the Dubai Thalassemia Centre to work as one team.”

No comments: