Transitioning from pediatric to adult care when living with sickle cell disease

Sickle cell disease, an inherited disorder where red blood cells stiffen and change shape when the body is under stress, can lead to vascular blockage, destruction of red blood cells and life-threatening complications. Parents of children with sickle cell disease often worry about what happens as their child is transitioning to adult care. Will care be available? What does care for sickle cell disease look like in adulthood?

Pediatric hematology-oncology specialist Nnenna Badamosi, MD, understands the concerns of parents and teenagers living with sickle cell disease as they look to the future. She offered reassurance and answers on how treatment for sickle cell disease changes as children transition to adult care.

Sickle cell disease from infancy into childhood

“Newborn babies and infants are protected from the initial effects of sickle cell disease thanks to a variant of hemoglobin, or the protein in red blood cells that carries oxygen through the body, that they still have from their time in the womb,” said Dr. Badamosi. “Symptoms of the disorder generally start to appear around the first birthday, including pain, swollen hands and feet and jaundice.”

The spleen, an organ in the abdomen that supports the immune system and helps to clear out destroyed red blood cells, may also start to dysfunction as the premature destruction of red blood cells becomes overwhelming. Loss of spleen function leaves patients with sickle cell disease more susceptible to infection.

Growing up with sickle cell disease

“As children living with sickle cell get older, their healthcare needs change,” said Dr. Badamosi. “Teenagers or young adults may become more prone to acute painful episodes caused by those vessel blockages. Many young adults find that these occasional episodes of pain become chronic pain syndromes over time.”

Teenagers are also taking their first steps towards building an independent life, with the unique health challenges that go along with sickle cell disease adding extra demands to an already complicated process. These teens experience the usual life demands of school, work and relationships along with needing to learn how to manage doctor appointments, testing and prescriptions, insurance coverage, staying up-to-date on preventive health screenings and more.

These transitions occur at a time when the complications of sickle cell disease can be life-threatening if not promptly addressed. As a result, teenagers and young adults require additional attention and support to manage their health.

Supporting your teen as they transition to adult care with sickle cell disease

“Parents can support their teenagers and young adults as they navigate this new phase by teaching, advocating for and partnering with their children while still making adjustments that acknowledge that they’re growing up,” said Dr. Badamosi. “Just like parents help their teenagers prepare for adulthood and empower them with the skills they need to succeed, the additional layer of managing a chronic health condition is just as important.”

A lifespan clinic is an important aspect of healthcare transition, as it bridges the gap from child-centered care to the adult medical system for teenagers and young adults. A lifespan makes sure your child will still have access to the familiar care they’ve always relied on without worrying about sudden loss of access as they move into adulthood.

The multidisciplinary support provided by lifespan clinics makes sure your child has a whole team of experts who have their back, fostering independence for teens and young adults while still giving them a safe place to go for care.