Adrienne and Howard Pickett were surprised when their son, Ryan, was diagnosed with sickle cell disease (SCD) shortly after birth. Adrienne had a family history of SCD, but the family did not know that Howard also did. Ryan’s diagnosis was hemoglobin SS (Hb SS), which is typically the most severe form of the disease.
From infancy, Ryan was seen by doctors at Children’s of Alabama. When he was 3 months old, his parents began attending SCD education classes for new parents at the Children’s Hematology Clinic.
“They teach you what to look for and how to take care of your baby when they have a (pain) crisis,” Adrienne explained.
Ryan’s first pain crisis happened when he was 1 year old. His parents thought it was a cold and noticed he had some labored breathing, so they took him to be seen at Children’s. They learned he was in a pain crisis and gave him medication to help manage it.
Having lived with SCD his entire life, Ryan, now 13, understands his disease and how to recognize when a pain crisis is about to occur.
“He has learned to differentiate between something like a normal headache and sickle cell pain, even to the point of whether he is not going to be able to manage the pain and have to go to the hospital,” Adrienne said.
Today, Ryan loves to play flag football, basketball and his Xbox when he is not in school or studying. He and his parents recently agreed for him to take part in a research study at the Children’s Hematology Clinic. The study includes taking the medication Crizanlizumab, which currently is approved for patients 16 and older. This medication is received though an IV, and Ryan is carefully evaluated while receiving the medication.
Ryan and his parents are actively involved with the Sickle Cell Foundation of Central Alabama. Adrienne recently was asked by the director of the foundation to serve as a team leader for a new parent support group. In the same way Children’s has helped her family, Adrienne is helping other parents who may need guidance.
“We try to get together with other parents to bring awareness for sickle cell to ensure that they are equipped with what they need,” she said. “Our goal is trying to help them help their kids learn to thrive in today’s world.”