Mutual support, social media and Usher
Sharing your experiences with others
People with Usher, and their families and friends, often find it helpful to share stories, successes and achievements, ideas and experiences and strategies for coping especially when newly diagnosed or at times of change. Sometimes people meet up face to face but we know that people with Usher are living far and wide and get in touch with each other in other ways.
In a University of Birmingham / Sense research project someone with Usher said, “You have to see what happens, when it happens, if it happens, but if you’ve got support, you can’t ask for much more”.
Although Usher syndrome brings challenges, many people with Usher lead fulfilling and independent lives. People with Usher can and do have relationships, get married, have children, go to university, travel, go to work and enjoy numerous leisure pursuits. By making contact we can share and learn from others.
How to contact others
Although the Sense Usher Service has contact with many people with Usher, as well as their families, we are unable to give out confidential personal information without permission and discussion. So here are some other ideas about connecting people:
Facebook groups can be good for people to share their interests and opinions, news of events and meetings and give ideas and tips. Some people like to join in by posting news, photos, videos and opinions whilst others are happy to watch and read. In many cases the views are personal as we are all different. Public groups are open to anyone and all content seen by everyone. Other groups are closed so that you need to ask to join and only members can see posted information or comments.
Please join our Usher Service public group.
There are many Facebook groups and pages for people with Usher or their families.
Listed here are some of the longer established groups relevant to Usher / RP as at December 2015. If you find other useful groups please email email@example.com:
UsherVibe (Usher Syndrome & Deafblind Support) (closed Facebook group)
Usher & Deafblind Accessibility This is another page covering assistive technology and more, brought to you by the UsherVibe group.
Usher Social (private Facebook group)
Molly Watt and Friends Living with Usher syndrome (closed Facebook group)
US FAMILIES (for Usher Syndrome) (public)
Usher Syndrome Coalition (charity page)
International Usher Syndrome Network (closed Facebook group)
Usher Friends UK (closed Facebook group)
Usher Support Networking – Usher/Deafblind only (private Facebook group)
Johnboy’s deafblind awareness (private Facebook group)
Usher Moms (private Facebook group)
Proud Moms of Children with Usher Syndrome (private Facebook group)
Usher Me In (community)
NoisyVision - Usher Syndrome - Through the limits and beyond (community page)
Other groups are specific to retinitis pigmentosa or sight loss but often include references to Usher:
Twitter is another way you may find comments, information or links related to Usher. Follow the Usher twitter account on @SenseUsher. The main Sense Twitter account is @Sensetweets and technology is at @technologysense
Skype / Facetime
Some people with Usher use Skype and Facetime to open up a world of contacts – can be great for those using sign language or who find the telephone difficult without being able to lip read. If you would like to use Skype with the Usher Service please email for an appointment (Monday-Thursday 10am-3pm) letting us know if you need to use sign.
As a personal journal or diary, more and more people with Usher are using blogs as a way to express their thoughts, feelings, interests and experiences. Often writing about your own experiences can be helpful to you, as well as being a great support to others on the Usher journey. Blogs can be highly personal and relate to certain levels of sight or hearing loss, but they can be useful if read with an open mind. As well as the Sense blogs, some of which involve people with Usher, others include:
Limping Chicken – for Deaf people with some Usher blogs
Amy Bovaird – USA based
Usher Coalition Family Network - USA based but open to parents of children with Usher around the world
Usher Peer Support Project
Sense’s Usher Peer Mentor Scheme is for people with Usher Syndrome across England, Wales and Northern Ireland. We are looking for people who will act as peer mentors, giving support to other individuals to enable them to make changes in their lives. We will also offer peer mentor training.
Several of the Sense ambassadors have Usher. Read their stories:
Sense branches and other groups for people with Usher
Sense branches welcome all deafblind people including people with Usher. Link to relevant branch pages
This group brings people together to combat isolation and provide mutual support to its members. It holds regular meetings as well as social events. It also campaigns on local and national issues.
Get involved with Sense
You can become involved in Sense by joining our events, participating in research projects, taking part in holidays and even fundraising all of which may be good opportunities to network socially. Membership of Sense is free. Apply online .
Created: February 2016
Review due: February 2018
First published: Wednesday 2 December 2015
Updated: Monday 22 May 2017