Skin disease affects approximately 20% of children and teens, and significant birthmarks affect about 5% of the population. One study compared the health-related quality of life for children with chronic skin conditions to other chronic diseases of childhood including diabetes, epilepsy, asthma, kidney disease and cystic fibrosis. Chronic skin disease was ranked second compared to cerebral palsy in regards to impairment of quality of life. This leads to a profound effect on the psychosocial development of a child who is affected by skin disease. Two out of five children with a chronic skin conditions have some psychosocial impairment including social withdrawal, lack of confidence and depression, and it has been found that the severity of the condition does not always correlate to the degree of impairment.
This is not surprising, considering Americans spend more on their appearance than on health and education combined. Our society is one that values external beauty and esteems conformity with aesthetic standards which unfortunately leads to social stigma, alienation and bullying of individuals affected by skin disease and birthmarks. As a result, these affected children frequently internalize the consistent negative reactions from others and often suffer from a lifetime of poor body image and low self-esteem. They feel all alone and isolated, and they typically hold the belief that no one can understand what they are going through. Parents of children with skin disease and birthmarks also face special challenges. Often, they feel guilt, shame and helplessness. They see how others stare at their babies and children, and they are often asked rude and upsetting questions about the conditions affecting their children. In extreme cases, some families are even reported to child protective service agencies based on the misconception that they may have precipitated the condition by abuse or willfully neglected the issue by withholding treatment.
We at A Children’s House for the Soul want to help re-write this story by bringing together individuals with similar struggles around facilitated activities and discussions that will help them feel connected, validated and understood. We hope to encourage and inspire our program participants with the knowledge and confidence to face these challenges with acceptance, positive awareness and coping strategies that will lead to empowerment and advocacy.