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.