Anticipatory counseling, therapy, and at times pharmacologic intervention can have a major impact on quality of life. In the early years, parents are severely shocked that their child, previously felt to be normal, has a chronic, fatal disease. This is complicated by extreme feelings of guilt resulting in overprotective behavior and damage to the family unit. Early psychological care may prevent such problems. Adolescence is a particular crisis period and can be complicated by hopelessness, despair, seclusion, denial and non-compliance.
Young adults have to come to terms with life and death.