Children’s National Health System serves one of the largest sickle cell disease populations in the country, treating more than 1,400 children and young adults, from birth to age 21. Children’s National will hold a Sickle Cell Disease Symposium on Saturday, Nov. 8, from 8 am -noon for medical providers and 9:30 am – 4 pm for families and patients living with sickle cell at the main hospital, known as the Sheikh Zayed Campus for Advanced Children’s Medicine, 111 Michigan Avenue NW, Washington, DC, 20010.
Parents, families, friends, pediatricians, and community physicians who focus on management of the disease are welcome to attend the event. Lunch and free parking validation will be provided for symposium attendees.
Sickle cells contain abnormal hemoglobin called sickle hemoglobin or hemoglobin S. “Sickle-shaped” means that the red blood cells are shaped like a crescent. Sickle cells are stiff and sticky and tend to block blood flow in the blood vessels of the limbs and organs, and can cause episodes of pain and long-term complications.
Sickle cell disease is the most commonly identified genetic disease on the newborn screen in the United States, yet we feel it is something not talked about enough in the community,” says Allistair Abraham, MD, a blood and marrow transplantation specialist at Children’s National.
“Very few people actually understand what sickle cell disease is,” says Dr. Abraham. “This symposium shows Children’s commitment to tackling this disease, and reassurance to families that this is a top priority, and to empower them,” says Dr. Abraham.
“Each year, 80 newly diagnosed infants with sickle cell disease are seen by our Infant Sickle Cell Program team,” says Emily Riehm Meier, MD, a hematologist at Children’s National with an expertise the disease.
“A team of physicians, nurse practitioners, and social workers that provide education about the diagnosis, supportive care, and treatment options for families,” Dr. Meier says.
“Through blood transfusions and the latest drug therapies, Children’s National specialists lessen the effects of the disease with early interventions through our Infant Sickle Cell Program, and have even cured the disease through our Sickle Cell Transplant Program,” says Dr. Meier.
Among the topics that will be discussed at the symposium:
- Stroke risk in children with sickle cell disease is over 200 times that of a healthy child. Children could be at risk of stroke even as early as two years of age, “a significant risk compared to any other scenario,” says Dr. Abraham.
- The only cure for sickle cell disease currently available is a bone marrow transplant, but only 20 to 30 percent of patients who need one have a matching sibling who can donate bone marrow for them. Children’s National is coordinating the National Marrow Donor Program (NMDP). “The idea would be getting more people into the registry,” Dr. Abraham says, noting that the registry needs more enrollment of African-American participants.
- The sickle cell team at Children’s National is integrated with the bone marrow transplant team, guiding parents through a difficult process.
- Children’s National has initiated a “buddy program” for patients to have good blood donor matches. The Transfusion Buddy program provides patients with blood from donors whose red cell antigens closely match their own. This may reduce the amount of antibodies the patients form, and make finding compatible blood for their future transfusions easier.
- Only one FDA approved medication is used to treat sickle cell disease, hydroxyurea. However, it is only approved for adults at this time, says Dr. Meier.