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Usher's (syndrome/illness)

Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
A friend of mine told me last night, that her mother has Ushers.
What we know is that she is becoming blind, and losing her hearing too.
Apparently this syndrome/illness is hereditary (even more worrying 4 my m8)
and the sufferer becomes totally blind and deaf(horrific).
Does anyone out there know more about it, and are there any support groups in the Lancashire area, for sufferers and/or carers/relatives?
Thanx =)

We are all in the gutter.
The difference between us is that some of us face skyward..

Comments

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Originally posted by Babe_Behind_The_Bar:
    A friend of mine told me last night, that her mother has Ushers.
    What we know is that she is becoming blind, and losing her hearing too.
    Apparently this syndrome/illness is hereditary (even more worrying 4 my m8)
    and the sufferer becomes totally blind and deaf(horrific).
    Does anyone out there know more about it, and are there any support groups in the Lancashire area, for sufferers and/or carers/relatives?
    Thanx =)


    god that sounds awful babe, I haven't found any local support groups searching google, but I did find this list of links which she will probably find useful http://www.ncdeafblind.org/usher.htm
    http://web.ukonline.co.uk/hearing.concern/fush.htm is a link to the usher's page of the website for hearing concern in the UK.
    http://www.deafblind.com/deafblnd.html is a resource list for deaf/blind on the net

    as is http://www.deafblind.co.uk/
    http://www.deafblinduk.org.uk/ is self explanatory

    another deaf/blind site in the UK http://www.sense.org.uk/homepage.html

    Listserve have a newsgroup, she can join (if she has a computer) here http://www.tr.wou.edu/CGI-BIN/WA.EXE?SUBED1=deafblnd&A=1

    to get all of these, I typed usher+deaf+blind+UK in te search window of www.google.com

    Her local health centre should be able to pass her on to any local deaf/blind organisations who should be able to find support groups for them.

    Pass on my sympathy & I hope they get all the support they need

    j9

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Apparently Usher's Syndrome is very rare and there are only 40 cases in the UK or something. I read an article in a magazine about it but it was at New Year so I can't really remember much more than that, sorry!
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