to increase public knowledge about the debilitating disease
Knowledge of the lifelong condition is very low despite it being the second most common beta-globin gene defect in the UAE
30 June 2022, Dubai, UAE: Health professionals from across the region came together to bring awareness to Sickle Cell Disease (SCD), a genetic disorder that affects the body’s red blood cells, through a patient-focused campaign held across the emirates on 28-29th June 2022. A panel of specialists in the field also gathered at a roundtable to discuss the disease and its prevalence in the UAE as well as how it affects patients and their family members.
The spirit of the campaign was to shed light on SCD and its symptoms and address the misconceptions with expert knowledge, highlight the treatment options from specialized doctors, to encourage patients to get an early diagnosis, as well as lend support to those with the ailment.
For many years SCD has continued to be a major global public health issue and one of the world’s leading genetic disorders. It has a high fatality rate among infants and children in the developing world, where an estimated 50–90% of infants born with SCD do not make it to their fifth birthday. Globally, it is forecasted that there will be a 30% growth in the number of people with SCD by 2050.
The attendees were able to benefit from the information shared by Dr. Asma Sultan Al Olama, President, Emirates Society of Haematology along with Dr. Mozah Al Marshoodi, Consultant Physician & Clinical Fellowship in Consultive Hematology, Emirates Society of Haematology; Prof. Salam Al Kindi, Professor & Senior Consultant Hematologist at Sultan Qaboos University Hospital, Oman; Dr. Jaafar Al Touk, Consultant Hematologist at Hereditary Blood Disorder Center, Ministry of Health Bahrain and SCD Team Leader at Bahrain MOH; Dr. Anwar Kadhim Saeed Ali, Consultant Psychiatrist, Hereditary Blood Disorder Center, Ministry of Health, Bahrain and Zakariya Al Kadhem, Chairman of the Bahrain Sickle Cell Society.
SCD is a serious and lifelong condition affecting all major organs, lowering immunity and shortening life expectancy. Symptoms include mild to severe anemia, painful crises, frequent infections, hand and foot syndrome and stroke. If left undiagnosed this can lead to bone defects, multiple organ dysfunction and other complications. Doctors advise that early diagnosis by a licensed Haematologist is key to ensuring proper preventive treatment. For new-borns, testing for haemoglobin abnormalities is now common to detect serious, life-threatening diseases.
Commenting on the event, Dr. Asma Sultan Al Olama, President, Emirates Society of Haematology said, “The goal of this campaign was to create awareness about SCD and provide people with the right knowledge, highlighting its prevalence in the UAE. It is the second most common beta-globin gene defect in the UAE, after Thalassemia. The country has also imposed a mandatory pre-marital examination law since over 20 years. Sickle-cell disease is one of the diseases that need medical advice if it is present in both parties. During the consultation, it is advised not to complete the marriage. If the two parties insist on marriage, the country has provided what is known as IVF to produce a child free of disease (IVF PGD and diagnosis during pregnancy PND). Despite its high-risk, awareness on the disease and treatment & screening options are still very low. It was great to see several participants joining us at the program, learning about its prevalence, symptoms and treatment options. With the right knowledge, guidance and support, we can help patients afflicted with the disorder lead a happier life.”
At the core of the awareness drive, Dr. Mozah Al Marshoodi, Consultant Physician & Clinical Fellowship in Consultive Hematology, member of Emirates Society of Haematology said “The sickle cell (HbS) gene occurs at a variable frequency in the Middle Eastern Arab countries. In the last couple of years, genetic diseases such as SCD has constituted a significant cause of chronic health problems, morbidity and mortality and hence are a major burden on health care systems. The lack of effective disease prevention and awareness programmes can be constituted as one of the primary reasons for the high prevalence. Improved education programs for individuals, health-care providers, premarital screening, prenatal and neonatal diagnosis, coupled with early preventive care and treatment of disease can prove to be an extremely beneficial step in creating a plan to eradicate this disease with the help of medical experts, government and patient-advocacy groups.”
Joy Khoury, Country Communications & Patient Engagement Head for GCC at Novartis commented, “In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Our partnership with the health authorities across Gulf Countries aims to improve the diagnosis and treatment of people with sickle cell disease through a comprehensive approach that includes treatment and disease management, training and education, and elevating basic and clinical research and scientific capabilities. This lifelong illness often takes an extremely emotional, physical, and financial toll on patients and their families. Therefore, Novartis is taking steps to help address the needs of patients with sickle cell disease by using innovative science and digital technologies to create transformative treatments in areas of great medical need.”
Due to the high migration of expats, a large number of immigrants have contributed to a ‘gene drift’, leading to the establishment of abnormal genes in several areas. Especially in the UAE, the incidence of Beta Thalassemia or b-Thal is high.
The event was organized by the Emirates Society of Haematology in coordination with Meeting Minds Experts (Professional Conference Organizers), endorsed by the Emirates Oncology & Hematology Nursing Society and Omani Society of Hematology, and sponsored by Novartis, a global healthcare company.
About Emirates Society of Haematology:
Emirates Society of Haematology works to foster the speciality of Haematology in the UAE and form links with colleagues in the UAE, regional countries, and the international haematology community. Its attention is focused on the improvement in the quality of care for patients suffering from conditions prevalent throughout the UAE. The society is under the umbrella of the Emirates Medical Association and now has approximately 90 members and associate members from various fields of haematology. The society also strives to create and develop medical education opportunities to determine its members’ training needs and aims to introduce structured postgraduate education in haematology.
