Managing mental health is an important part of sickle cell disease treatment

Children diagnosed with a chronic condition at a young age face challenges that go beyond their physical health. Diseases like sickle cell disease have a particularly stressful impact, not only on the patient, but also on their families and caregivers.

Sickle cell disease causes severe and unpredictable pain, intense fatigue, and frequent infections that lead to prolonged hospitalizations, frequent appointments, and missed school and social events.

The disease, in turn, can have a detrimental effect on the patient’s mental health. Examples of stressors include: worrying about the long-term effects of the disease on the body, burdensome physical symptoms such as severe pain and fatigue, trauma from frequent visits to the hospital and possibly the emergency room, and feelings of isolation because the patient misses school and activities due to pain.

Each year, approximately 2,000 babies are diagnosed with sickle cell disease at birth. Although the exact number of people with sickle cell disease is unknown, it is estimated that 100,000 people in the United States have been diagnosed and more than 20 million people worldwide.

Sickle cell disease impacts multiple areas of a patient’s and their caregiver’s lives. Given the significant chronicity and pain associated with the disease, one study found that caregivers of children with sickle cell disease between the ages of 5 and 18 reported that their children had statistically significantly lower levels of physical, psychological, and social well-being compared to healthy children from similar socioeconomic backgrounds.

Depressive and anxiety disorders are more common in patients with sickle cell disease, compared to the general population. In addition, children under 5 years of age with sickle cell disease and repeated hospitalizations were found to have higher levels of emotional reactivity, depression and anxiety, and aggressive behavior.

When it comes to supporting a chronically ill child or teen, it is important to equip yourself and him/her with coping techniques to relieve stress and anxiety.

Be careful how you respond to stress

A study found that 40% of caregivers of sickle cell disease reported that the disease affected their daily lives and mental health; psychological stress for parents impacts their child’s health and quality of life. Create coping strategies with your child and reach out to other families and organizations for support.

Don’t focus on the negative

As a parent, it can be hard to see your child unhappy or in pain. Try to shift their focus with games that focus on coping techniques. Find a way to celebrate each milestone, no matter how small.

Help your child learn to help themselves

You and your child can come up with ways to help them feel at ease when they are feeling stressed or anxious. For younger children, this might include singing a calming song together, practicing deep belly breathing, and providing stickers and charts for good behavior.

Include older children in discussions about their treatment so they feel some ownership of their illness. Encourage them to take charge of things like pain management or medication, and build a foundation for independence when they are older.

September is National Sickle Cell Disease Awareness Month. For more information about sickle cell disease, visit sicklecelldisease.org.