On Friday 20 December, the Epidermolysis Bullosa (EB) patients of Caritas Baby Hospital (CBH) and their parents were invited to meet, connect and share hope at an EB workshop at CBH. The Department of Social Services (DSS), with the cooperation of the Dutch Helping Hands Project, conducted the workshop. About 90 attendees filled the room and enjoyed a both educational and playful program.
The workshop aimed at connecting parents newly taking care of a child with EB and parents who have accompanied an EB patient for a longer time in order for them to realize that they are not alone. The DSS also aimed at conveying hope to the EB patients with Christmas and the New Year full of possibilities approaching.
After attending a lecture on suitable nutrition for EB patients, the children enjoyed a theater play and received Christmas gifts. The DSS equally showed appreciation to the mothers who accompany and take care of their sick children with a gift and the distribution of special creams, bandages and other material needed for EB patients.
EB is a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to minor injury. Together with medical staff or a dietician, DSS staff members regularly visit EB patients at their home to prevent that the children suffer harm when going outside to the hospital.