BALTIMORE (WJZ) -- September is Sickle Cell Awareness Month. The genetic disorder is typically diagnosed at birth and often has life-long consequences.
The Kennedy Krieger Institute in Baltimore is where specialists across a myriad of fields are helping some of the youngest patients grapple with the symptoms of this disease.
Kennedy Krieger is one of the few in the world to offer comprehensive testing, evaluations and follow up care for patients with the disease.
According to the CDC, more than 100,000 Americans are living with sickle cell anemia - an inherited disorder - where cells don't properly change their shape.
Dr. Eboni Lance, the medical director at the Kennedy Krieger neuro-developmental clinic, explains that cells get stuck in certain positions which can ultimately affect the body in different ways.
"The most common symptom that a person with sickle cell disease is a pain crisis, which is basically tremendous pain in one part of their body or multiple parts of the body, including the hands or the feet, or the back of the hips," said Dr. Lance.
She has gathered a team of neurologists, neuropsychologists, and behavioral specialists to help young people overcome learning disabilities, challenges with speech and any developmental delays.
Petrina Ford's son, Ji'air, is a patient at Kennedy Krieger. He gets monthly transfusions to treat his sickle cell anemia.
Ji'air works with specialists on speech and behavioral techniques -- and he's thriving.
"I just say everything is going good with me and sickle cell," Ji'air said.
Their advice to other families living with the disease:
"Sit back and think about what is the best care for your child, don't jump to anything, or make any rash decisions because it can be life-changing," Petrina Ford said.
Anyone interested in the Kennedy Krieger Institute and its work with sickle cell patients can go to their website.
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