Abu Dhabi Health Services Company (SEHA) participated in the activities of the International Thalassemia Day by launching an awareness campaign, especially dedicated to the patients, and organizing workshops and joint meetings between the patients, the concerned medical staff and the patients’ families in order to discuss the disease progress and developments, to exchange information and to share personal experiences, in collaboration with the Thalassemia Center at Dubai Health Authority which has organized many events starting from 28 April till 8 May 2013.
On this occasion, “SEHA” launched many programs, events and workshops as well as awareness campaigns for patients undergoing treatments at its hospitals, centers and public medical clinics in Abu Dhabi, Al Ain and the Western Region, particularly in Tawam Hospital in Al Ain and Sheikh Khalifa Medical City.
The thalassemia activities were held at Tawam Hospital in Al Ain on Sunday 5/5/2013 and were divided into two intervals: the morning interval which included a workshop discussion and a joint meeting between the Thalassemia Center in Dubai and the Department of thalassemia in Tawam Hospital, during which patients, the medical staff and the administrators met up to exchange personal experiences and discuss the disease progress and developments; and the evening interval was held at Rotana Hotel- Al Ain and included educational and recreational activities for patients and their families during a gala dinner.
Moreover, Sheikh Khalifa Medical City hosted on May 6th, 2013 a workshop discussion and a joint meeting organized by the Thalassemia Center in Dubai and the Department of Thalassemia in Sheikh Khalifa Medical City, and included patients and their families on one hand and the medical and administrative staff on the other hand, in order to discuss the disease progress and developments, to exchange information and to share their personal experiences. In the evening, a recreational and educational activity was organized for thalassemia patients and their families at a gala dinner held at the Rotana hotel Abu Dhabi.
On the occasion of the International Thalassemia Day, Dr. Ali Abdel Karim Obaidli, Executive Director of Medical Affairs at "SEHA", emphasized SEHA’s commitment to providing quality health care services according to the highest standards and specifications for all members of society and to provide an exceptional dedicated care for thalassemia patients, pointing to the importance of awareness about the dangers of this disease and the need for medical examinations and tests for the couples on the verge of marriage in order to ensure they are not carriers of it, thus avoiding giving birth to thalassemic children.
He also stressed on the importance of awareness campaigns launched by medical authorities and institutions in the UAE to educate society about the disease and the means of preventing it from spreading, knowing that the UAE spends tremendous amounts of money to treat Thalassemia patients, as the cost of medication for one patient is estimated at nearly 200 thousand AED per year, keeping in consideration that this sum is spent just to keep the patient alive and not to attain full recovery, a process which requires a 1 million AED bone marrow transplant surgery to cure the patient and save him from heart disease, liver and spleen failure, diabetes and other untreatable chronic diseases which require medication in order to keep the patient alive and prevent any further complications.
What is Thalassemia?
The word Thalassemia originates from the Greek word "THALASSA" which means the sea, and "HAIMA" which means blood, this was first recognized among the people living around the Mediterranean Sea. Thalassemias are a number of inherited blood disorders affecting the production of the Hemoglobin carrying Oxygen and nutrients to the body cells.
The fact that this disease is hereditary and is passed on to children from one or both parents carrying Thalassemia genes (two types "Alpha" & "Beta") means that marriage between carriers of the gene will undoubtedly result in Thalassemic Children. We mean here those who are suffering from Beta Thalassemia Major and Minor… Hence, the pre-marital medical tests to prevent this disease are highly important.
The main signs and symptoms of the disease show in the form of an acute anemia in newborns, with a yellowish skin tone and low production of Hemoglobin (Hb). Early detection of the disease as well as blood and medication transfusion usually lead to having a normal disease - free life, although the patient will still need a blood transfusion every 3 to 4 weeks for the rest of his life, along with daily Iron supplements because of an iron accumulation caused by blood transfusion, which in turn may cause damages to the heart and liver.
There are other arduous and expensive treatments with unguaranteed results such as:
- Bone marrow transplantation from a matching donor after chemotherapy. The global success rate of this treatment method is between 80 & 90%.
- Stem cell therapy with cells taken from the umbilical cord and transplanted into the patient.
- Gene therapy by modifying the genes of stem cells in the patient’s bone marrow as a means to make it produce normal blood cells. However, this treatment is still in the process of experimentation.
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