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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.

Healthcare

Hunter syndrome may affect several different parts of the body, meaning that to manage the range of symptoms, a team of healthcare professionals of a variety of specialisms may be involved in your child’s care. This is sometimes referred to as a multidisciplinary team (MDT).

It is recommended that at diagnosis, a full assessment is made of commonly affected parts of the body. These areas are then checked at intervals dependent on the individual’s needs and on the usual practice of your local specialists.

Overview of the specialists

Some of the specialists who may be part of the team of healthcare professionals caring for your child are described below.

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.