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:

Social networking

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 usher@sense.org.uk:

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)

Information and Support for British Asians with RP  (public)

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:

Retinitis Pigmentosa Support Group  

The British Retinitis Pigmentosa Peer Support Group

RP Fighting Blindness (BRPS) Information and Support Group

GuideDogs Coffee Lounge (closed)

Retinitis Pigmentosa  

Retinitis Pigmentosa  - Research and Treatments

Twitter 

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.

Blogs

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

Usher Positive 

Usher Syndrome Blog on US based Usher Syndrome Coalition 

Molly Watt Trust 

Deafblind Runner's 100 Run Medals Challenge by James Clarke

Amy Bovaird – USA based 

Sunshine amongst rain

Usher Networking

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.

Sense Ambassadors 

Several of the Sense ambassadors have Usher. Read their stories:

James Clark 

Marcus Innis 

Molly Watt 

Sense branches and other groups for people with Usher

Sense branches welcome all deafblind people including people with Usher.  Link to relevant branch pages

Hearing and Sight Impaired UK

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. 

Hearing and Sight Impaired North 

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