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.

STORM Patient/Family Engagement Workgroup Members in the News

Rae Blaylark, CHW

'Emergency': Minnesota slow to act as sickle cell cases climb | Minnesota Public Radio, July 17, 2018

Rae Blaylark, a member of the STORM Patient/Family Engagement Workgroup and the president and founder of the Sickle Cell Foundation of Minnesota, was interview by Minnesota Public Radio regarding her advocacy work and the state of sickle cell disease in Minnesota. Rae speaks about being the mother of a young adult with sickle cell disease and the lack of support she experienced that drove her passion to advocate for others. The article discusses how Rae and Dr. Stephen Nelson (STORM partner, MN state lead) have partnered to ignite change by informally “tapping the state Health Department, the [University], health insurers, the Center for Health Equity, emergency room physicians and the governor's office.” Click here to read more

Rare Disease Week | February 25 – March 1, 2018

Rae attended Rare Disease Week on Capitol Hill – an event that brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. In addition to the nearly 400 rare disease patient advocates, more than 30 sickle cell patients and advocates participated in the events held in Washington D.C. This was the largest representation from the sickle cell community that has ever been present for this week-long event!

www.rareadvocates.org

Courtney Stinnett

CDCs “My Story” Series

Courtney, an active member of the STORM Patient/Family Engagement Workgroup from Indiana, was highlighted in the latest edition on the Centers for Disease Control and Prevention series on Real Stories from People Living with Sickle Cell Disease. Courtney discusses managing her SCD pain, along with her son’s anemia. “Living with sickle cell can be challenging and unpredictable, but I believe it makes us some of the strongest people on earth. The type of sickle cell disease (SCD) that I have is called hemoglobin S/beta(+)-thalassemia (also called sickle beta-thalassemia or HbS beta-thalassemia). Although it is a milder type of SCD, I still have pain episodes and other health issues. When I have a pain crisis, it can occur at any moment. It’s unpredictable. I can literally just start hurting all of a sudden.”

You can read more of her story here

Tools & Resources

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

A parents perspective on living with sickle cell disease - “Learning to Navigate the Healthcare System as Parents of Children with Chronic Disease”.

Hydroxyurea clinical decision support tools: Brochures for initial and recurring clinic visits
Kevin and Robyn Kinebrew describe their journey with sickle cell disease from the very 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 share opportunities for families to connect with physicians. The Kinebrews also share their experiences about helping their sons prepare for transition to adult care.

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


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.