Comprehensive Care for Survivors of Sickle Cell Disease

Transforming care for pediatric sickle cell disease

The Sickle Cell Disease Program at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta is the largest comprehensive pediatric program in the country, caring for more than 2,000 children and teens with sickle cell disease each year. Combining the latest proven technology and research with a caring, pediatric-friendly approach makes our program a top choice for the treatment and care of sickle cell disease. While some cases of sickle cell disease are manageable with ongoing care, patients with more severe sickle cell disease may be best treated with a bone and marrow transplant (BMT). A successful BMT has been proven to cure sickle cell disease in some cases. However, the treatment can increase the risk for other mild to severe health conditions.

The first in the country to offer comprehensive follow-up care to sickle cell disease survivors

Not only is the Aflac Cancer and Blood Disorders Center a leader in pediatric BMTs and home to the largest pediatric sickle cell disease program in the U.S., but we are also the first to offer a sickle cell disease-specific survivors’ clinic. The Sickle Cell Disease Survivor Clinic has a multidisciplinary team of specialists who treat children and teens who have received a BMT or gene therapy, and are now free of sickle cell disease. Our goal is to help children and teens navigate their new normal as sickle cell disease survivors by providing them with the resources, support and education they need to live healthy lives.

Located at the BMT clinic at the Aflac Cancer and Blood Disorders Center, Sickle Cell Disease Survivor Clinic is open to patients up to age 21. During each annual clinic visit, your child will have:

• Vitals checked
• Lab tests
• Imaging
• Other organ tests

The 2- to 3-hour clinic visits will include consults with multiple members of our multidisciplinary team, including nurses, a psychologist, an endocrinologist, a hematologist and a BMT specialist. It’s also common to receive a referral for neuro-cognitive testing after BMT transplant. At the end of the visit, you will be given a detailed packet with your child’s health summary, which can be used to provide medical and transplant history to your child’s primary doctor and other providers.

Why should my child visit the Sickle Cell Disease Survivor Clinic every year?

A BMT can cure sickle cell disease, but it comes with health risks that change over the course of an individual’s life. These risks include organ function problems, reproductive and fertility issues, so it’s vital for patients to enter adulthood understanding their health history. The Sickle Cell Survivor Clinic provides step-by-step and age-appropriate education about each patient’s disease history. This education allows patients to properly communicate his or her medical condition and history to future providers.

Can my child receive vaccinations after a BMT?

After receiving a BMT, it is necessary for children and teens to be revaccinated, as they need to retrain their new immune system. Our team can help facilitate these vaccinations. Revaccinations make the most out of your child’s cure by reducing the likelihood of preventable infections.

BMT

• Ann E. Haight, MD

Hematology

• Kirshma Khemani, MD

Endocrinology

• Lillian Meacham, MD

Psychology

• Elizabeth Thompson, PsyD

Nurse Practitioner Team

• Kathleen Spencer, NP
• Ellen Olson, NP