Wiskott-Aldrich Syndrome – WAS
Introduction
Wiskott-Aldrich syndrome is a rare genetic disorder of the immune system that primarily affects boys. It is characterized by abnormal immune function and a reduced ability to form blood clots.
Wiskott-Aldrich Syndrome and Your Family
Living with Wiskott-Aldrich syndrome can be difficult not only for the person who has it but also for their family members. It is important for families to talk openly about Wiskott-Aldrich syndrome and about how the family is dealing with it so misconceptions can be identified and corrected and children can learn to identify and cope with their reactions. Some boys with Wiskott-Aldrich syndrome have to work hard to develop their self-confidence and sense of security. All children need to be reminded that they have many positive characteristics, especially when their illness requires special attention. Some children who have a brother with Wiskott-Aldrich syndrome worry about their brother being in pain or dying from the disease. Some think that they may develop symptoms because they look or act like a brother who has the disease or they believe that the disease is contagious. Some children struggle with how much time their parents spend with their sick brother. Many families benefit from meeting or talking to other families affected by the same rare disease. Counseling also can help families cope with the challenges of Wiskott-Aldrich syndrome. At the same time, many families say that Wiskott-Aldrich syndrome has brought them closer together. Through this disease, family members learn about controllable and uncontrollable aspects of life. Although certain aspects of the disorder cannot be controlled, how a family responds to the stress of any illness is controllable and an important aspect of managing Wiskott-Aldrich syndrome. Children also learn who they can turn to for support and how to solve problems. Acknowledging both the challenges and opportunities that Wiskott-Aldrich syndrome presents helps children develop resilience.
For more information please download the “booklet” from IPOPI on Wiskott-Aldrich Syndrome (WAS)
