Make Sickle Cell Disease a Part of the Conversation With Your Doctor

By MDwise Chief Medical Director Jeffrey Wheeler, M.D., MDwise Equity Officer Anye Carson

Sickle Cell Disease (SCD) can cause debilitating pain and can shorten a person’s life by 20 years or more. SCD is passed from parent to child. A mother or father can inherit the gene causing SCD (this is called “being a carrier”) and have no signs of SCD.  If that person has a child with another carrier of that gene, the baby may be born with SCD. 

Sickle Cell Disease causes red blood cells to take on the crescent shape of a sickle. At the same time, the cells become hard and sticky, making it possible for them to block blood vessels and keep oxygen and nutrients from getting where they need to go. This can cause extreme pain, organ damage, heart problems, severe infections and even early death. The Martin Center Sickle Cell Initiative in Indianapolis reports that nearly 1,700 Hoosiers have SCD, with 87% of them being Black. 

Sickle Cell Disease and sickle cell carrier screening is part of newborn testing done on every newborn child and with every international adoption. This testing can tell a parent if the newborn child has Sickle Cell Disease or is a carrier.  Your child’s medical provider will tell a parent if the child has SCD. A doctor might not even mention to a parent that a child has been born with the sickle cell trait.

If you do not know the results of your child’s newborn testing results, ask your provider. Parents should make a point of understanding whether a newborn carries the SCD gene. They should be certain to pass that information along to their children when they’re old enough to have families of their own.

Sickle Cell Disease treatments make it possible to limit the disease’s impact more than ever before. While these advancements in treatment are important, our biggest weapon against Sickle Cell Disease and its painful impact is information.

We might not be able to eliminate SCD by talking about it, but we can move closer to the day when no one has to live the painful, difficult and shortened life that comes with Sickle Cell Disease.