Every September, La Rabida joins others around the county to recognize Sickle Cell Awareness Month and the lives impacted by this disorder. Sickle cell disease is a genetic disorder that affects red blood cells that are responsible for delivering oxygen to the body, also known as hemoglobin. Those with sickle cell disease have blood cells that are formed in a curved, sickle shape. The sickle-shaped cells have difficulty passing through small blood vessels and can block blood flow. This can result in anemia, unpredictable pain crises, and other complications.

The symptoms of sickle cell vary among patients, and La Rabida works one-on-one with families to determine the best treatment for their child.

“We talk about how to manage pain at home, so they have a plan when a crisis comes. We discuss oral pain medications and how and when to use them. We also discuss non-pharmacological therapies which can include things like distraction therapies, deep breathing exercises, guided imagery, and warm baths. Sometimes despite the use of all of these tools, patients may require a higher acuity of care and we refer them to the emergency room” explained Dr. Radhika Peddinti, La Rabida’s Pediatric Hematologist.

At La Rabida, we take a unique approach to caring for those with sickle cell by utilizing the medical home model.

“We provide a patient’s primary care and any social or financial support along with their hematology care,” shared Tanisha Jones, La Rabida Sickle Cell Nurse Practitioner.

By utilizing an interdisciplinary approach, La Rabida provides patients with access to care coordination services, support services, and medical specialists. La Rabida’s team of social workers, family advocacy specialists, nutritionists, and infant mental health and behavioral health therapists work in collaboration with the primary care pediatricians and medical specialists to ensure the child receives all the care that they need. “The involvement of a multidisciplinary team, which can include psychologists and a pain management team, helps with overall health with the aim to maximize the quality of life,” said Dr. Peddinti.

While there is not a universal cure right now, patients with sickle cell can still live happy, full lives with the proper management. Living with a complex medical condition like sickle cell can be difficult, and we are here to serve as a support system and help patients live life to its fullest.

“Sickle cell is a chronic illness and it’s really challenging and trying, but it’s important to not let the actual disease overtake you. You can still live with sickle cell and accomplish all of your dreams,” shared Tanisha.

This story was featured in the September 2020 issue of Currents. Read the full issue here.