Children who were diagnosed with a chronic condition at an early age face challenges that go beyond their physical health. Diseases like sickle cell have an especially stressful impact on not just the patient, but their families and caregivers as well. Sickle cell disease causes severe and unpredictable pain , intense fatigue, frequent infections that lead to prolonged hospitalizations, frequent appointments and missed school and social events .
In turn, the disease can have a detrimental effect on the patient's mental health; these stressors can include being worried about the long-term effects of their disease on their body, burdensome physical symptoms including significant pain crises and fatigue, trauma of frequent visits to the hospital and potentially the emergency room and feelings of isolation as they miss school and activities due to pain. Every year, approximately 2,000 babies are diagnosed with sickle cell disease at birth. While the exact number of people living with sickle cell disease is not known, it's estimated that 100,000 people have been diagnosed in the United States, and more than 20 million people world wide.
Sickle cell disease impacts various parts of a patient's and their caregiver's life. Given the significant chronicity and pain associated with the disease, one study found caregivers of children with sickle cell disease between the ages of 5 to 18 reported that their children had statistically significant lower levels of physical, psychological and.