/ Updated June 16th, 2023

Living With Sickle Cell Disease: Transitioning From Pediatrician to an Adult Doctor

: Dr. Muneeb Niazi Written by Laura Gesualdi-Gilmore
SurvivorNet

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Transitioning to an Adult Sickle Cell Specialist

Since Sickle Cell Disease (SCD) is often diagnosed in infancy, patients may grow close to the pediatrician who monitors them throughout childhood.
The transition from regularly seeing your pediatrician to seeing an adult specialist can be challenging and induce some anxiety.
However, it’s important to find a sickle cell specialist and continue regular monitoring, even if you have a mild form of SCD.

Sickle cell disease (SCD) is a group genetic blood disorders that is often diagnosed shortly after birth. In the United States, newborns are screened for the disease so treatment can begin immediately if necessary.

Because of this, many children with SCD will be under the care of the same pediatrician for much, if not all, of their childhood. The disease needs to be monitored regularly, so a stable and close doctor-patient relationship can be very comforting.

When children with SCD become adults and need to transition to seeing an adult specialist, this can understandably cause some anxiety, Dr. Sophie Lanzkron, Director of the Sickle Cell Center for Adults at Johns Hopkins, tells SurvivorNet.

“It’s really hard, that transition,” Dr. Lanzkron says.

“So, you’ve had a doctor who has taken care of you since you were a baby who knows everything about you who is a pediatrician, and pediatricians are really nice. Not that we adult doctors aren’t really nice. We are, but it’s different. You are a grown-up now … it’s often a hard transition because that pediatric hematologist is part of your family. You’ve seen them and they’re part of your life.”

More: Understanding Sickle Cell Disease

Transitioning to Adult Care for Sickle Cell Disease

Dr. Lanzkron stresses that it’s important, when making the transition from pediatric to adult care, to ensure that you are seen by a sickle cell expert.

“Everyone in this country who lives with sickle cell disease should be seen by a sickle cell expert,” Dr. Lanzkron says.

She highlights the importance of “continuity” of care. This means you continue to have your SCD monitored regularly, even if you have a more mild form of the disease.

What Is Sickle Cell Disease (SCD)?

SCD is a group of genetic disorders. It is inherited, meaning it is passed down within families.

People who have SCD have red blood cells with abnormal hemoglobin (a protein in the blood that carries oxygen). This causes their red blood cells to be C-shaped (resembling a sickle tool).

Normal red blood cells are disc-shaped, with a thinner center and a thicker
outer rim.

Sickle cells tend to die early, which leads to shortages of red blood cells in people with the disease. Plus, the sickle cells can become hard and sticky, and they may clog blood flow when traveling through small blood vessels, which means proper oxygen does not reach tissues.

This lack of oxygen can lead to severe pain, organ damage, and other issues.

More: Symptoms of Sickle Cell Disease

Treatment for SCD will depend on the type a person has as well as other factors (like their overall health and the severity of the disease).

More: Types of Sickle Cell Disease

More: Sickle Cell Disease Treatment Options

Questions to Ask Your Doctor

If you have sickle cell disease and are transitioning to adult care, here are some questions you may consider asking your doctor:

Can you recommend a sickle cell specialist for me?
Is there a difference between pediatric and adult care for SCD?
What factors about my disease do I need to discuss with my new doctor?
How often should I plan to see this new specialist?

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