About Sickle Cell Disease (SCD)

SCD is the most commonly inherited blood disorder affecting approximately 90,000 Americans and 1 out of 500 African-Americans 2. SCD is caused by a genetic mutation in hemoglobin, which predisposes red blood cells to become rigid and misshapen, "sickle"-shaped. SCD is a lifelong condition complicated by acute and chronic medical problems, which can be life-threatening and disabling. Common complications include episodic severe pain, chronic hemolytic anemia, increased vulnerability to infection and multi-organ damage 3. SCD adversely impacts the physical, emotional, social, and vocational lives of both the affected individuals and their families across the lifespan.

Patients & Families

STORM values the role that parents, patients, and caregivers play, as they are the people who most intimately understand sickle cell disease. We believe that engaging a variety of stakeholders, including patients and family members, is critical to our success and will help us improve health outcomes faster.

Teens and Young Adults

Here you can learn more about sickle cell, share with other teens and young adults living with sickle cell, get tips for staying healthy and get prepared for the transition to an adult doctor. Click here to continue

Tools & Resources

At STORM, we strive to make current and relevant resources available to parents, patients and families.

Kevin and Robyn Kinebrew describe their journey with chronic illness from the beginning, when they received a call that their 33-week twins, hospitalized in the neonatal intensive care unit, had sickle cell disease. The Kinebrews share how they have approached clinical interactions over the past 19 years and view opportunities for communicating and connecting between parent and physicians, while also helping their sons prepare for the transition to adult care.
Kevin and Robyn Kinebrew describe their journey with chronic illness from the beginning, when they received a call that their 33-week twins, hospitalized in the neonatal intensive care unit, had sickle cell disease. The Kinebrews share how they have approached clinical interactions over the past 19 years and view opportunities for communicating and connecting between parent and physicians, while also helping their sons prepare for the transition to adult care.

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REFERENCES
2. Hassell KL. Population Estimates of Sickle Cell Disease in the US. Am J of Preventive Medicine. 2010;38(4S):S512-S521.
3. National Heart, Lung and Blood Institute, http://www.nhlbi.nih.gov/health/healthtopics/topics/sca/, Accessed May 5, 2014.