Voices about living withCHARGE syndrome


Publish date
Given the right support, persons with CHARGE syndrome can overcome not only medical challenges but also various other obstacles, and lead fulfilling lives. This publication shows, through case studies and interviews, some daily lives, challenges, and achievements of persons living with CHARGE syndrome, emphasizing the importance of understanding and support from their community.   Living with CHARGE syndrome can entail different aspects and challenges. Often, the focus revolves around the medical aspects, and less on how individuals can function in their day-to-day lives. There is a lack of case descriptions and interviews, telling the story from the perspective of the persons living with the syndrome themselves.In this publication you meet Thomas’s mother who gives a very personal account of how it was to learn that her newborn baby had CHARGE syndrome. Read about Dominic who is in primary school, knows three languages but also struggles with balance and sight, which makes him exhausted at the end of the day. Karl recently got his drivers’ licence and wants to move to the capital to get to know more people who knows sign language. Together with Charlie, Anna, Inga, and Linda they have all let us into their lives, displaying challenges, personal growth, and development.The aim of this publication is to show the diversity and give a voice to a group that seldom is heard. Hopefully, parents, legal guardians, and relatives can get a more positive picture of what life with CHARGE syndrome might look like.