Rare Disease Report

June 19 is World Sickle Cell Day

JUNE 18, 2017
Mathew Shanley
In 2008, June 19 was officially designated as World Sickle Cell Awareness Day.
The international awareness day is observed annually in an attempt to increase public knowledge and an understanding of sickle cell disease, while educating those who may not know enough about the struggles experienced by patients and their families and caregivers.
Sickle cell disease patients have red blood cells that are hard, sticky and C-shaped (like the farm tool, a “sickle), and the potentially-fatal rare genetic condition affects an estimated 95,000 Americans – both adults and children. The misshapen sickle cells clog smaller blood vessels, result in excruciating pain and put patients at an increased risk for infection acute chest syndrome and stroke.
Sickle cell disease has been a focus for Rare Disease Report throughout the years, and the resources below are sure to be helpful to patients, caregivers and advocates.

At the 58th Annual American Society of Hematology (ASH) Meeting & Exposition in December, Rare Disease Report met with Kevin Kuo, MD of the University of Toronto to discuss transitioning teens with sickle cell disease into adulthood.

At the Sickle Cell Disease Coalition launch meeting in September, Rare Disease Report sat down with Kyle Smith, a sickle cell patient to talk about what the future holds for sickle cell.

In March, Rare Disease Report spoke with Bill Cummings, a parent to a sickle cell disease patient. In this video, he discusses the urgency for better treatments for the condition.

Why Football Players Should Be Tested for Sickle Cell Trait; August 22, 2016
Even those without sickle cell disease are potentially carriers, and susceptible to symptoms under extreme conditions, such as vigorous exercise on hot days or at high altitudes. Exercise Collapse Associated with Sickle Trait (ECAST) is, unfortunately, not uncommon. 

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