Hunter syndrome has a considerable impact on life beyond healthcare needs, for both the child with the condition and their family. Parents and caregivers report that Hunter syndrome affects family cohesion, and caregivers may be more likely to experience stress and depression.
Parents and caregivers can take a break by using children’s hospices or social services respite care. Your local MPS society will be able to give you more information about this.
Counselling and other types of support may help with the emotional impact of living with Hunter syndrome. Your family doctor can advise you about this.
Making friends with other families affected by Hunter syndrome can be a great help. Reaching out to IMPSN or your local MPS society can be a good place to start.