Hundreds of people gathered today in the nation’s capital in support of Kuwait’s Thalassemia Patients.
The event, organized by the Kuwait Thalassemia Society, was held under the patronage of His Excellency Dr. Mohamed Albosairy, the Deputy Head of the Parliament in cooperation with Dr. Maasooma Almubarak, the Minister of Health under the slogan of “This Life Is Yours; Color It With Your Will.”
The purpose of the event was to provide an opportunity for doctors, patients, and families associated with the Thalassemia disease to make positive contact with others in the country that are facing the same situation – trying to live an enjoyable and productive life despite dealing with a chronic disease.
The afternoon’s events which took place at Shiik Flamingo resort included speeches by His Excellency Deputy Head of the Parliament, His Excellency Assistant under Secretary of the Ministry of Health and Doctor Mona Burhama Head of Kuwait Thalassemia society, swimming, games, a party, a presentation and a workshop about Thalassemia management and achievements of the scientific committee of the society, and dinner.
“Kuwait is a kind and generous nation, so it is only right that we should come forward today to celebrate the successes of the Thalassemia community. All sufferers of this disease should be applauded for their courageous struggle to live normal, functional lives in the face of great challenge,” said Dr.Mona Burhama, Head of the Kuwait Thalassemia Society.
Thalassemia is considered a genetic blood disease children contract when both their parents are carriers of the disease. Hence legislations of obligatory health pre-marriage test are believed to contribute greatly to the prevention of this disease.
Dr. Maha Bourusly, Kuwait Thalassemia Association Spokesperson commented, “The most significant achievement in the scientific committee of the Kuwait Thalassemia Association was the implementation of the law for obligatory pre-marriage tests. Kuwait Ministry of Health has set up a special committee of specialists to develop a mechanism to put into effect the above law. The Head of the Kuwait Thalassemia Association has also been invited to be a member of the committee.”
Treatment of Thalassemia, an inherited blood disorder, often leads to iron overload.
Iron overload is a cumulative, potentially life-threatening, unavoidable consequence of chronic blood transfusions used to treat certain types of rare chronic blood disorders, including Thalassemia and sickle cell disease, as well as other rare anemia and myelodysplastic syndromes…etc.
Signs of iron overload may be detected after as few as twenty units of blood. If left undiagnosed or untreated, the excess iron in the body is likely to lead to damage of the liver, heart, endocrine glands, and other organs in the body.
The body has no inherent mechanism to remove excess iron, so iron chelation is used as an effective treatment for transfusion-related iron overload.
Previous iron chelation treatments required frequent, subcutaneous infusion lasting eight to 12 hours per night for five to seven days per week as long as the patient continues to receive blood transfusions or has excess iron in the body. New oral chelators (now available in Kuwait) taken orally as a tablet dissolved in water or orange juice, once daily; result in much higher compliance and better quality of life.
"Freedom of movement and freedom is what all Thalassemia sufferers want, and that is what this Kuwait celebration is all about - freedom,” said Dr.Iman Mattar, member of Kuwait Thalassemia Society. “We fully support the ongoing efforts of the Kuwait Thalassemia Society, and we commend it for its excellent work.”
Today’s Kuwait Thalassemia Society event was made possible through the exceptional medical and logistical support of Novartis Oncology.
