The very first day Ashaunta Anderson dropped her then one-year-old son off at daycare, he returned home to her with his first fever. That fever led him to the emergency room and ultimately hospital admission. What caused all this? A complication of sickle cell disease (SCD). Ashaunta shares, “As a pediatrician and health services researcher, I struggled with this new reality, the one in which my family’s routines could be disrupted without warning, dependent on the health care system to restore order. I realized that I needed the hospital to have reliable routines when mine were in disarray, systems in place that would support high-quality, family-centered care.” Ashaunta and her family are not alone. An estimated 100,000 people in the U.S. are affected by SCD.
Photographs are care of Ashaunta AndersonAlong with Dr. Marilyn Hughes Gaston and other groundbreaking researchers, Ashaunta—coming from the perspective of both parent and academic—is working hard from a quality-improvement perspective to learn more about SCD and what it takes to protect children with SCD from overwhelming bacterial infections. Efforts are being made to expand the practical coping resources available to parents of children diagnosed with SCD and to reach out to families facing new diagnoses, as well. This critical work strengthens both the support system and treatment options available to those families learning today and tomorrow and each day thereafter that their newborn children have a painful blood disorder that has the capacity to affect every organ system in the body.
Photos care of Ashaunta Anderson and the SCDAA’s Facebook page
The one organization working tirelessly on a national level to improve the quality of health, life, and services available for individuals, families, and communities impacted by SCD is the Sickle Cell Disease Association of America (SCDAA). The SCDAA promotes the search for a cure for everyone in the world living with SCD and defies assumptions made for decades about what fundamental care is possible for people living with SCD and what that vital care involves.
Ashaunta encourages us all to visit the SCDAA’s website for more information on advocacy, relevant policies, and donations. “Do not underestimate your voice,” she urges. “Speak to your state and national representatives. Contact local agencies that support patients with sickle cell disease.” And use checkout code GIVE683 to donate 10% of your PLAE purchase to the SCDAA today. Shop now to earn a donation.