Debunking the myths around sickle cell disease

DR. KEVIN WILLIAMS | 10/5/2017, 11:54 a.m.
In the United States, sickle cell disease is considered rare because it affects only approximately 100,000 people nationwide.
Dr. Kevin Williams Contributed

In the United States, sickle cell disease is considered rare because it affects only approximately 100,000 people nationwide. As such, not many people in the U.S. are aware of what SCD is, or if they are aware, they have limited experience with the disease.

As with any disease, low awareness can spur myths and misperceptions and make it more difficult for those affected to obtain the care and support they need. Throughout my career, I’ve been asked a number of questions about SCD, many of which are common myths.

In this article, I will share some of the more common myths, in an effort to separate the facts from fiction.

Sickle cell disease is a “Black” disease

Myth! It’s true that in the U.S. more than 90 percent of people living with SCD are of African descent. In fact, SCD occurs in one out of every 365 African-American births. However, it’s not exclusive to this patient population. SCD is also found in people of Indian, Middle Eastern, Hispanic and Mediterranean ethnicities.

Sickle cell disease is contagious

Myth! You cannot “catch” SCD. It is a genetically inherited condition (passed down from parent to child). For a child to inherit SCD, both parents must carry the sickle cell trait (or have the disease), and each must pass the sickle cell gene to the child.

A person with the sickle cell trait will automatically develop sickle cell disease

Myth! Sickle cell trait is different from SCD. Just because a person carries the sickle cell trait does not mean the person will have the disease. What’s the difference? When a person has only one copy of the sickle cell gene that person will have sickle cell trait. Someone with SCD will have two copies of the sickle cell gene.

A person with sickle cell trait can, however, pass the disease on to his or her child, if the other parent also has trait. That’s why testing for sickle cell trait or disease is incredibly important. Sickle cell disease (and sickle cell trait) can be diagnosed through a simple blood test. In developed countries, such as the U.S., babies are now routinely screened at birth to determine if they carry the trait or have the disease.

People with sickle cell disease abuse pain medication

Myth! Studies have shown that there is no increased substance abuse in patients with SCD. The most common symptom of SCD is excruciating, debilitating pain that often does not respond to over-the-counter medications and needs opioids to provide relief. Over time, the body becomes used to the opioids—ultimately leading to high doses being required to manage SCD pain. This need for high doses of opioids (which may not even provide complete relief from the pain) has unfortunately led to the perception that these patients are “drug-seeking.”

A baby born with SCD will die before reaching adulthood

Myth! Until the 1990s, SCD was considered a life-threatening condition because many children born with the disease did not live to adulthood. In developed countries, such as the U.S., this outcome is no longer true. Most of the children live to adulthood, thanks to advances in SCD care.