Delving deep into the study of CHARGE syndrome and its diagnoses can be daunting. When reading, a picture of illness emerges, telling us everything about what is wrong, and what is afflicting the person, who might be someone’s loved one.
Frequently we find ourselves on pages filled with information that is challenging to comprehend. When only viewing the medical aspects, a one-sided picture is created. But who is the person behind the diagnosis? In discussions within the realm of disability issues, the consensus is that we are not defined by our diagnosis; rather, we are individuals who happen to have a diagnosis.
Of course, diagnosing is important, for the surrounding to give the right treatment and make adaptations for the person. But we must not forget that there’s always a person behind the diagnosis. With this publication, we aim to provide insight into what it means to live with CHARGE syndrome, uncovering the potential within these individuals. Or at the very least, we hope that we have been able to share some of the successes experienced by individuals with CHARGE syndrome.
Thank you for reading these personal stories. We hope that all of you may dance into the future like Charlie, or be the driver, choosing your own road, like Karl.