Video about Do’s and Don’ts!
Usher syndrome is a rare genetic disease that affects approximately one in 30,000 people. It is characterized by combined progressive hearing and vision loss and in some subtypes by a balance disorder. As a health professional, it is not always easy to know how to act and communicate with these patients. This is why the ERN-EYE network has created this video. The aim? To make medical staff aware of how to welcome people with Usher syndrome and to better meet patients’ needs in clinical settings.
“Be positive when talking to the patient about their disease: talk about changes in vision, emphasise what they will still be able to do, give them examples of positive role models they will be able to identify with, and encourage them to join patient groups such as the Retina and Usher family groups.” This is the kind of advice the video gives to health professionals on how to deal with people with Usher syndrome in a medical environment. Medical staff are often uncomfortable when exchanging with these patients. Thanks to this short video, continuously accessible on the ERN-EYE YouTube channel, they can now find all key information in 2.5 minutes.
For this project, the ERN-EYE team collaborated with a patient representative, ERN-EYE’s current ePAG chair, and with healthcare professionals from the network to gather all relevant information on Usher syndrome. The video consists of several sections about the clinical manifestation, the disease progression over time and do’s and don’ts. The clear graphic presentation makes it easy to find the key information to remember. A brochure will be also published to provide more detailed information.
The video is launched on September 16th, which is Global Usher Awareness Day, and is available on ERN-EYE’s social networks and under this link: https://youtu.be/ToLPiFuaauI