Daily Living with Hunter Syndrome

After a child is diagnosed with Hunter syndrome, parents face many real-life situations for daily living:

  • keeping track of medical information
  • emotional responses of siblings and family
  • talking to loved ones about the diagnosis
  • strangers and teasing
  • asking friends and family for help
  • difficult behaviors, socialization, and education issues
  • difficulties with eating, toileting, and sleeping
  • home modifications
  • travel

To provide guidance on these questions, the National MPS Society has developed a comprehensive resource for the parents of children with MPS—Daily Living With MPS and Related Diseases. The booklet was written in large part by parents, for parents, and it addresses all of the above situations and more. Daily Living With MPS and Related Diseases is available at no charge from the National MPS Society through their Web site: www.mpssociety.org