[nfb-db] Usher 3

[Darlene Laibl-Crowe]

Good morning, April...

One thing that is clear is that everyone is affected differently by RP for
their vision.  Different levels of vision loss and different ranges of
hearing loss.  So it is hard to put it all into a box with directions on it
and be all set to go.  Those with Usher have to be evaluated individually to
determine where their specific need is.  It is good to be part of groups
that are similar so that information of resources can be made available.  

I have Usher Type II (2) but I've met several people who have Type I and
Tyep III (3) as well!  

Here are some links that I found

http://ghr.nlm.nih.gov/condition/usher-syndrome

https://www.counsyl.com/diseases/usher-syndrome-type-3/

http://omim.org/entry/276902

http://www.usheriii.org/

http://www.asha.org/aud/articles/UsherSyndrome/


These are a few that I know of.  Your question asking if your vision will
stay the same...now, that is the catch-22 question.  No one knows...the
doctors, no one.  Like I said I've met many who have all three types and
they are all at different phases of the genetic disorder.  When I was first
told about my RP, I was led to believe that it will stay the same, then one
day it didn't.  There are many things that I've noticed that can make me
have a bad day and one of those is stress.  So staying calm helps me...but
life simply isn't stress-free.  The important factor is learning all that is
to be known so we can be sufficiently prepared...I say 'sufficiently'
because I don't think we can be adequately prepared.  That is why we must be
open to learning all the time, being resourceful and finding ways to
continue to be independent.  

That is why I learned Braille and even ASL.  I am not fluent in ASL but I
can communicate with it...slowly.  But I can only see it is someone signs in
my hands and that means I am very slow.  I don't get to interact with others
as much often as I should.  But since I am aural/oral (hearing/voice) I can
communicate well without sign language.  

Hang in there, April, there are many others out there who are dealing with
the fluctuating visionand hearing issues.  

Hope the links help some...I know even with Usher Type II, I don't know
everything I'd like to know either.  Thank God for research which is
happening all the time!

(smile)
Darlene


-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of April Brown
Sent: Friday, March 21, 2014 7:06 AM
To: nfb-db at nfbnet.org
Subject: [nfb-db] Usher 3

Good Morning,

       Even though I can't get a proper diagnosis, I am leaning toward Usher
3.  I only have one eye with vision, and it has dramatically decreased in
the last year, with all kinds of odd symptoms.   Of course, my vision issues
are complicated by double colobomas.

      My hearing is worse as well.  I do not hear low toned voices well.
And comprehension of spoken words is extremely slow.  In fact, for over a
decade, I had used closed captioning on the tv to understand most shows,
until my vision loss no longer allows me to.  So now, many science shows I
would otherwise enjoy, I can not hear or see.

     I have much much information on the prognosis of Usher 1 and 2.  Not
much on Usher 3.  

       Will my vision reach a spot and stay there?  I only have about 1/4 of
an eye left.  The tiny lower corner of my right eye next to my nose. 

       Does anyone have a link to a site with good information about Usher
3?

Thanks,


April Brown

Writing dramatic adventure novels uncovering the myths we hide behind.



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