Real Life Stories

Welcome to our collection of patient stories – a series of experiences from those living with Hunter syndrome and their families.

Following the journeys of those in similar situations can be comforting when living with a diagnosis, but keep in mind that Hunter syndrome affects everyone differently, and the stories featured here may not be typical of all those living with the disorder. Also remember that your healthcare team is your best source of information.

Thank you to all of the patients and families who kindly shared their stories with us. If you have been affected by Hunter syndrome and are interested in sharing your story, click here.