eBook: Introduction to Hunter syndrome

This eBook contains information on the signs, symptoms and diagnosis of Hunter syndrome, along with stories from families living with Hunter syndrome

Learn more about Hunter syndrome

Articles available now focus on the presence of sleep apnoea, hernias and recurrent ear and respiratory infections in children, and how they may be a sign of Hunter syndrome. Additional information also highlights DNA changes, the metabolic basis of Hunter syndrome, as well as the delayed diagnosis of rare disease.

After diagnosis: what next?

The leaflet After diagnosis: what next? describes some of the first steps after receiving a diagnosis of Hunter syndrome.

Discussing Hunter syndrome with your child's doctor

The leaflet Discussing Hunter syndrome with your child’s doctor includes some pointers that you may find useful for making the most of your healthcare appointments.

Hunter syndrome diary

The Hunter syndrome diary has space to record appointment times and note down any new symptoms, which may help prompt questions to ask, so you can make the most of your appointments.

Information for employers

The leaflet Information for employers may be a useful for employers on how to adapt the workplace for an employee with Hunter syndrome, or an employee who cares for someone with Hunter syndrome.

Information for teachers

The 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.

Information for young adults

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