Usher Support Group
Peer and professional support for people with Usher Syndrome and their families.
The Usher Support Group is for individuals who have Usher Syndrome. Usher Syndrome is a genetic condition in which people are born deaf or with partial hearing loss and a progressive vision loss which generally begins in late childhood and is caused by a eye condition called Retinis Pigmentosa (RP).
The diagnosis of Usher Syndrome is devastating, not only for the individual but also for their family and friends. As their field of vision deteriorates, people with Usher can feel isolated, not just from the hearing, sighted world but also from their family and friends. They often experience communication problems as it becomes increasingly difficult to see sign language or lip read. Some have very poor balance which can also severely restrict their freedom to move around with confidence and safety.
The Usher Support Group is for the person with Usher and their families, carers and friends. Through this group they can gain vital information, education and skills and promote the support and social networks they need.
The Usher Support Group provides those who participate;
• Advice and support, particularly when a person is first diagnosed, to understand Usher Syndrome and its effects
• Mentoring – connecting people with Usher to other who also have the condition
• Information – to people with Usher, families and professionals about particular ways to get the most out of life
• Training, education, health and social service information
• Recreational opportunities with a supportive group.
The group enables individuals who have Usher to develop coping skills to avoid isolation and gain knowledge of strategies to facilitate communication.
Research supports the beneficial effects of support groups which provide long term support, mutual aide and empowerment.
The Support Group is not just about “meeting” – it is also about being more positive, independent, proactive and life affirming. A number of recreational and social activities so far engaged in include swimming, canoeing, flying fox, archery, rock climbing, water skiing dining and socialising.
MORE INFORMATION
For more information Karen Wickham, Social Worker (08) 9473 5462 or lsfs@senses.asn.au
To download a copy of “Products for People with Sight and Hearing Difficulties” click here.
