Henrico | Services: Hematology/Oncology
Using Her Experiences to Help Others
“You can’t judge a book by its cover,” said 14-year-old Jasmine China, referring to individuals with sickle cell disease, an inherited blood disorder that affects Jasmine and nearly 100,000 other people in the United States. “It’s not always as easy as it looks.”
Because the primary symptom of sickle cell disease is chronic pain, many people are unaware of the disease or its impact on patients. Sickle cell disease is one of the diseases newborns are screened for at birth yet most patients don’t show symptoms until age four or five.
“As soon as she hit elementary school, she started showing symptoms,” said Nicole China of her daughter’s fevers and leg pain.
Sickle cell disease affects red blood cells, causing them to clump together and stick to blood vessels impacting blood flow. The disease can affect every organ system and is the most common cause of stroke in children. Children’s Hospital of Richmond at VCU (CHoR) treats 300-350 patients with sickle cell disease annually through weekly clinics at CHoR’s MCV Campus and clinics six times a year at its Fredericksburg location. CHoR’s comprehensive program includes a physician, physician assistant, educator, social worker, child life specialist and psychologist who work together to treat patients’ medical, social and emotional needs.
“Kids with sickle cell disease miss an average of 30 days of school a year,” said India Y. Sisler, MD, Interim Chief and Assistant Professor, Hematology and Oncology, CHoR. “Sometimes during a clinic visit, a child’s medical issues are stable but social and school issues are impacting their health. We have a whole team that deals with [these non-clinical issues].”
Because of frequent hospitalizations and sickle cell complications including an enlarged heart and damaged liver, Jasmine, an eighth grader at Richmond’s Binford Middle School, has attended school only about 30 days this year. She celebrated her 13th birthday in the hospital and has spent so much time on CHoR’s seventh floor inpatient unit, she’s known as “the seventh floor specialist” and has an unofficial hospital badge.
“She’s like a welcoming committee,” said Nicole. “Every stay she’s meeting someone and impacting them.”
As part of her treatment, Jasmine takes up to eight daily medications and receives regular preventative blood transfusions. Because blood transfusions are essential for sickle cell patients but often difficult to find, Jasmine is sponsoring a blood drive this fall to raise awareness of the disease and increase the number of blood donors.
“A transfusion could save someone’s life,” said Jasmine, who waited two days before matched blood was located for her last transfusion.
In addition to at least monthly clinic visits, Jasmine sees CHoR specialists from neurology, cardiology and endocrinology.
For Dr. Sisler, having input from these specialists “is hugely helpful” in providing the best care. When Jasmine wanted to join her school’s cheerleading squad last year, Dr. Sisler said Jasmine’s doctors “put their heads together so she could cheer with limitations.”
“My goal for Jasmine is that sickle cell is not her identity,” said Dr. Sisler. “I want to keep her disease in such a [place] that she can still be a kid.”
For Jasmine, the only one of Nicole’s children to inherit sickle cell genes from both parents, being a kid means enjoying art projects, shopping, surfing the Internet and spending time with friends.
For Nicole, it means, “knowing when enough is enough and when to push a little more to keep life moving.”