Samyiah was diagnosed with Sickle Cell Disease at birth. Every year, about 1,000 babies are diagnosed with Sickle Cell Disease. While still an infant, she needed to begin treatment to lower her risk of severe complications. Samyiah and her family were advised to visit the Sickle Cell Center at the Jonathan Jaques Children's Cancer Institute at MemorialCare Miller Children's & Women's Hospital Long Beach. The center is staffed by board certified pediatric hematologists and nurse practitioners and provides sickle cell diagnoses, treatment and long-term health management for patients from birth through young adulthood.
Sickle Cell Disease affects the body’s red blood cells by changing their healthy, round shape to a crescent shape which causes the cells to break down faster than they normally would. It also causes the red blood cells to clump together. These misshapen cells can then block blood flow anywhere in the body which can lead to severe pain, as well as many other complications including strokes, lung problems and kidney disease.
Once she arrived at the Jonathan Jaques Children’s Cancer Institute, Samyiah was placed under the care of the late Paula Groncy, M.D., pediatric hematologist/oncologist. Growing up with Sickle Cell Disease, Samyiah needed to visit Dr. Groncy frequently. She received many blood transfusions and needed surgery before the age of 6.
Since she was often hospitalized due to complications of her Sickle Cell Disease, Samyiah had to miss many of her elementary and middle school days each year. Her teachers knew why she was consistently absent, but her friends wondered why she was often not at school. It was difficult for her to explain to them why she was gone so much.
“I constantly felt like I had to justify why I was absent,” said Samyiah. “People tend to make up their own interpretations, especially since Sickle Cell Disease is not widely understood.”
Dr. Groncy started Samyiah on a medication called hydroxyurea which is recommended for nearly all patients with Sickle Cell Disease. For Samyiah, the consistent use of this medication ultimately resulted in fewer hospital stays as she got older, allowing her to go to high school without interruption and spend more time with her friends.
“With sickle cell disease, you are constantly trying to explain to people what the disease is, how it affects you, and the treatment,” Samyiah says. “In high school, it felt good to not have to deal with all that, and I just got to be Samyiah.”
Throughout her childhood, her family and friends were always there to support Samyiah. Now that she is an adult, everything is in her hands.
“In addition to medical care, the Sickle Cell Center also provides psychosocial programs such as family support, disease education, counseling, and school support services ,” said Leigh Hunter, RN, MSN, CPNP, pediatric hematology nurse practitioner. “Our goal is to ensure that our pediatric patients transition smoothly into adult care with a thorough understanding of their disease and the ability to advocate for themselves.”
“The team here at Miller Children’s & Women’s have been helping with this transition and knowing what resources are out there for me,” Samyiah says. “At times it can be difficult because everything is still kind of new, but everyone has been super patient and kind during the transition.”
Samyiah may be more independent now, but she still has a great support system to help her, even at school. As a student at California State University, Long Beach, Samyiah has access to great resources like the Bob Murphy Access Center (BMAC), which assists students with disabilities as they transition into adulthood and prepare for their careers.
Samyiah encourages others like her to not be discouraged by their condition.
“Just because you have Sickle Cell Disease doesn’t mean you can’t do anything you want,” Samyiah says. “Having Sickle Cell Disease isn’t the end of the world. With the right support team of your family, friends, and an amazing care team, you can manage Sickle Cell Disease and live a long, fulfilling life.”