Months into the pandemic, we’re learning more about children with sickle cell disease who become infected with the virus that causes COVID-19.

In addition to the myriad complications related to sickle cell disease and treatment, a COVID-19 infection creates additional challenges. According to the U.S. Centers for Disease Control and Prevention (CDC), children with underlying medical conditions such as sickle cell disease may have an increased risk for severe COVID-19.

Here’s what we’re telling our patients and their families.

Sickle cell disease and day-to-day activities

Maintain physical distance from others. Wear a mask. Continue with treatment. I am hearing about many patients avoiding hospital visits because they fear COVID-19 exposure. At St. Jude, we can triage the severity of the issues and, if necessary, see our patients in person. Remember, postponing a medical visit can lead to severe sickle cell disease complications.

Sickle cell disease patients should be vigilant about following public health recommendations related to COVID-19. I recommend going out only when necessary and avoiding non-essential activities. While we have reintegrated in-person patient visits at St. Jude Children’s Research Hospital, we are only at about 50% of our pre-pandemic volumes. We use telehealth and phone calls to reach as many patients as possible.

Given all that information, the No. 1 question we get is:

Can my child with sickle cell disease attend school in person?

Whether a St. Jude patient or not, this is a personal decision. Each child’s situation is different, and there isn’t a common answer for everyone. Each option, whether you choose virtual or in-person school, has risks and benefits.

To understand the risks associated with their decision, patients and families should discuss options with their care teams.

Our research regarding sickle cell disease and COVID-19 is ongoing. We’re not at a point where we can reach meaningful conclusions, but we do know that COVID-19 infections in sickle cell disease patients can lead to potentially serious issues.

Four ways COVID-19 causes problems

Any viral illness in individuals with sickle cell disease has the potential to trigger complications. The coronavirus that causes COVID-19 can trigger sickle cell disease complications because of the already (underlying) problems in people with sickle cell disease, including:

  1. Hyperinflammationwhen a body’s immune response goes out of control and begins attacking healthy cells.
  2. Deep vein thrombosis a blood clot, usually in the legs, but can also happen in the lungs and other veins, that can cause pain and/or swelling.
  3. Immunocompromised having a weakened or impaired immune system to the point where your body cannot effectively fight infection.
  4. Life-threatening organ damage.

When children with sickle cell disease have respiratory viral illnesses such as the flu, they have the usual signs and symptoms, such as fever or cough. But the infection can also trigger more severe problems, including life-threatening acute chest syndrome, pain crises or pneumonia. We see the same pattern with COVID-19.

The physiological processes associated with sickle cell disease and COVID-19 overlap. For some children, that leads to more severe problem. For instance, patients with kidney or lung damage from sickle cell disease may incur additional damage.

Sickle cell disease and COVID-19 means more supervision

Treatment for sickle cell patients infected with the novel coronavirus mirrors our current COVID-19 treatments. This includes anti-viral medications and monoclonal antibodies. Children with sickle cell disease and COVID-19 are monitored, even if their symptoms are mild. This higher level of supervision allows us to respond more quickly if the symptoms become severe, or if the treatment creates complications. Prolonged pain can develop in COVID-19 patients, and clinical research is ongoing to determine if the pain is caused by the novel coronavirus.

COVID-19 vaccine and sickle cell disease

Several promising COVID-19 vaccines are on the horizon. Sickle cell disease is one of 11 conditions that the CDC found to be associated with an increased risk for COVID-19 complications. As a result, I am advocating for children and adults with sickle cell disease to be included among the high-risk groups with priority access to vaccination.