VDH shines light on sickle cell disease during awareness month

RICHMOND, Va. (WWBT) - The Virginia Department of Health is recognizing Sickle Cell Awareness Month and Newborn Screening Awareness Month this September with the message “Know. Screen. Connect.”

Sickle cell disease is a blood disorder that affects the shape and function of red blood cells and can cause pain, according to the Virginia Department of Health.

“It can cause complications when it comes to the disease because red blood cells get stuck in small blood vessels and they block the flow of oxygen to the organs in the body. So it can really affect pretty much every organ system in our bodies,” said Marcus Allen, program director for the Children and Youth with Special Health Care Needs Program at VDH.

Sickle cell disease is inherited. When both parents have sickle cell trait, there is a 1 in 4 chance with each pregnancy that their child will have sickle cell disease, according to the Virginia Department of Health.

A simple blood test can determine whether a person has sickle cell trait.

“It’s important we encourage people to know their status so that they can know whether or not or what the chance is for them to pass along the disease to their children. It’s actually very, very important. We’re not asking them to know that, to tell them what to do with their reproductive future. We want them to have the knowledge so they can make the best decision for their family,” Allen said.“If they decide they want to have a child or if the person is already pregnant and they realize that they are both carriers of the trait, we have a pediatric network of clinicians in five regions and the care is excellent.”

Every year in Virginia, approximately 66 babies are identified with sickle cell disease and 1,700 babies are identified with sickle cell trait through the Virginia Newborn Screening Program, according to the Virginia Department of Health.

If a newborn tests positive for sickle cell disease, the Virginia Department of Health notifies both the family’s pediatrician and a sickle cell center.

“Let’s say the young person or the infant is born in Richmond, she would notify VCU and then they would work with the pediatrician and the family to get the child into care. So it’s life preserving and life saving,” Allen said.

Once a family knows they are affected, they can be connected with specialists to help prevent complications and provide care for the child, according to the Virginia Department of Health.

“The adult network allows for people living with sickle cell disease when they leave pediatric care to transition to adult care with an adult provider in the same region where they got pediatric care. So I think care is coming a long way,” Allen said.

The Virginia Department of Health also maintains a statewide sickle cell registry housed within its Office of Family Health Services.

“The thing that I like the most about my state is that we work together. So it’s community advocates, people living with sickle cell disease, it’s the state government, so you have people like me as well. And then on top of that is private health systems. We’re all working together to support people with sickle cell disease. And it’s really one of the most incredible things I’ve ever seen in my career,” Allen said.

You can find more information about connecting to care through the Virginia Department of Health’s Sickle Cell Program and Newborn Screening Program.

Parents can also request a copy of their child’s newborn screening result for sickle cell trait. It goes back to early 2001.