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