NOVARTIS Sheds Light and Pioneers in Research and Activities to Raise Awareness on Sickle Cell Disease
• Sickle Cell Disease is one of the most common chronic blood disorders in the world1. Globally around 300,000 babies are born with the disease annually while 300 million people carry the trait.4,9 Gulf is a region with one of the highest prevalence rates of Sickle Cell Disease among Middle Eastern ancestry marking Saudi, Oman, and Bahrain as the countries with the highest rates respectively.17
• Sickle cell pain crises or VOCs are considered the clinical hallmark of the disease, and are triggered, in part, by multicellular interactions that form clusters of cells, which can block or reduce the blood flow to organs.2 Sickle cell pain crises can be frequent and sudden, and are associated with an increased risk of life-threatening complications.13,14
• A reduction in VOCs is therefore the focus of scientific innovation in this disease area, and a key measure of its success.
• Sharing inspirational stories of Sickle Cell patients from around the world lends a positive light to those affected by the disease and reaffirms that these patients overcome many hurdles to be productive in the society.
• June 19th has been designated as World Sickle Cell Day and in 2020 will run under the campaign NOTALONEINSICKLECELL, (notaloneinsickcell.com), and rethinksicklecelldisease.com
United Arab Emirates, October 20, 2020: Sickle cell blood disease is known to be one of the most common and painful genetic blood disorders in the world1. Its impact is debilitating to those who suffer from it as well as for families and communities that surround the patients. Raising awareness on the disorder helps those affected with knowledge on coping with the disease, making them part of a large global community and support system. Every June 19th, sickle cell patients, their loved ones, medical staff, and patient organizations dedicate the day to bringing attention to the disease, distributing knowledge, and empowering those affected. This year the day will be coined by the phrases “Know More, Do More Together” and “NotAloneInSickleCell”, highlighting the importance of knowledge and information in learning to live and cope with the disorder and sharing inspirational stories of how patients from around the world overcome challenges and motivate themselves in difficult times. Through the platform www.notaloneinsicklecell.com users have access to these motivational stories from all over the world.
Sickle cell disease is a complex and debilitating genetic blood disorder that goes beyond sickle-shaped red blood cells. The disease is associated with chronic inflammation, causing higher levels of cell adhesion proteins, including P-selectin, which make both the blood vessels and certain blood cells stickier and prone to multicellular interactions, or clusters, in the bloodstream3, 4, 5. This environment can lead to the acute episodes of pain known as sickle cell pain crises, or VOCs, as well as life-threatening complications.2 VOCs are the main reason why individuals living with sickle cell disease seek medical care in hospitals, 13, 14 leading to approximately 200,000 ER visits in the US every year.
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