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Community and Support

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. Your local MPS society is a good place to start.

Visit the Resources page and read patient and carer stories to find out how the condition affected others.

Education

Children with Hunter syndrome may have special educational needs, and physical limitations, which will mean adaptations will need to be made to the learning environment. The school may also need to be flexible if you have healthcare appointments during school time.

Some children with Hunter syndrome will be able to attend mainstream school, whereas others will benefit more from being in a school for children with special educational needs.

For children with neuronopathic Hunter syndrome, suggestions for the educational setting include: having a varied and flexible curriculum tailored to the child; giving one-to-one support; having familiar people and routines; focusing on activities that the child enjoys; and having a soft play area.

The downloadable leaflet Information for teachers can be a useful resource to give to your child’s teachers, to help them understand Hunter syndrome and how it may affect the educational setting.

Download the Information for teachers leaflet

Employment

If you are a family member or caregiver for a child with Hunter syndrome, your work life may also be affected. You may need to take time off work, or to work flexibly, to attend healthcare appointments, or to care for your child.

The downloadable leaflet Information for employers can be a useful tool to use in discussion with your employer about the adaptations and flexibility that you may need in your job.

Your local MPS society can also give you information about your entitlements as an employee.

Download the Information for employers leaflet

Living as a young adult with Hunter syndrome

Young adults who have Hunter syndrome will have to transition from paediatric healthcare to adult healthcare. Your healthcare team will help to coordinate with this change to a new team of people, to make it as smooth as possible.

Living as an adult with Hunter syndrome presents a range of things to consider. You may take more responsibility for your healthcare and caring for yourself independently, and may start thinking about future relationships, employment and living away from home.

The downloadable leaflet Information for young adults can give more information on living as an adult with Hunter syndrome.

Download the Information for young adults leaflet