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Living with Hunter syndrome

Caring for a child with Hunter syndrome can affect every area of daily life, not just in terms of medical needs, but also the social, emotional and lifestyle impact.

There will be lots of appointments with doctors and other healthcare providers, which are discussed in more detail in this section of this website. You may need to talk to your employer about having time away from work to attend appointments, or to care for your child. The leaflet Information for employers found on the Family and relationships page has more information on this.

Hunter syndrome will impact on the lives of the family and friends of someone with the disease, emotionally and practically. There are several forms of support available, see the Resources page for more information.

In this section you can learn more about the practical ways in which you can support your child, your family and yourself.

The Hunter syndrome diary helps to keep track of changes in your child between appointments, a useful record to bring to healthcare appointments to aid discussions.