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With a national median life expectancy of 42-47 years, people with sickle cell disease (SCD) face many challenges, including severe pain episodes, stroke, and organ damage. Compounding these complications is that SCD—an inherited, lifelong blood disorder characterized by rigid and sickle-shaped red blood cells that stick to the blood vessels, blocking blood flow—has only one FDA-approved treatment, no widely available cure, and some people may have limited access to appropriate care.
However, a new report published online today in Blood, the Journal of the American Society of Hematology (ASH), shows that some people with mildly symptomatic SCD may live long lives with proper management of the disease, including strong family support and strict adherence to medication and appointments. This analysis of four case studies details the outcomes of four women with milder forms of SCD who have far surpassed the U.S. median of 47 years old for women with the disease, instead living as long as 86 years.
videos & visualsFinding the Right Doctorhttps://www.youtube.com/watch?v=9WdVEAU5...
education & researchMobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality o...Background: Adherence to illness self-m...
education & researchNeurocognitive and Psychological Effects of Persistent Pain in Pediatric Sickle Cell DiseaseBackground: Pain is a major complicatio...
videos & visualsStill Standing Documentaryhttps://www.youtube.com/watch?v=Oa764K24...
news & eventsA Britain’s Got Talent contestant revealed how she turned to singing following the death of her sonA Britain's Got Talent contestant whose ...
Community CenterThe Green Family StoryAJ had his first sickle cell crisis at a...
Community CenterA Patient Advocate’s Take on Sickle Cell Disease: The Pain and the PromiseSeptember is National Sickle Cell Awaren...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.