[nfb-db] Usher 3

[Shadow Wolf]

Darlene,
I must disagree with your assertion on "congenital heart problems". 
There is no proven link between Usher's and congenital heart failure. 
The latter might be related to Usher's who are wholly inactive, lazy, 
couch potatoes and poor eating habits. It has nothing to do with 
Usher's. I'm talking about physical disabilities such being paralyzed at 
the wait down, feet issues, nerves in the spine or legs, no feelings in 
the legs and feet and things of that sort. Some of it is genetic. In my 
case, I have no family history with RP, Usher's or deafness. I am the 
only one in my family. I figured the genetic mutation came from 
generations far back in the family blood line.

--S.W.

On 3/21/2014 7:02 AM, Darlene Laibl-Crowe wrote:
> I have to disagree, SW...I believe all types of Usher have a tendency to
> have other disabilities.  For example, all three are at a risk of having a
> congenital heart problem.  I don't and I know several who have type 1,2 and
> 3 who do not they only have the vision and hearing issues.  I do know some
> who have type II who have the congenital heart conditions.  So, it varies in
> all three groups.
>
> I had heard one time that there was a possibility of a Type 4 because some
> of the research came back as inconclusive.  Dr. Kimberling and other
> researchers of the genes of those who have Usher Syndrome have come a long
> ways but still much more is needed to be known.
>
> Again, those who have Usher have varied degrees of vision and hearing loss
> and it is important to be flexible and open to it all. (smile)
>
> Have a great weekend!
> (smile)
> Darlene
>
> -----Original Message-----
> From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of Shadow Wolf
> Sent: Friday, March 21, 2014 9:08 AM
> To: NFB Deaf-Blind Division Mailing List
> Subject: Re: [nfb-db] Usher 3
>
> Hello April,
>
> Everyone who has Usher's will eventually lose their vision at one time or
> another. And I think those with Usher's 1 and 3 also have balance problems.
> I believe that Usher's 1 starts at birth or at a young age. I admit, I don't
> know much about either Usher's 1 or 3. But those who suffer from Usher's 1
> or 3 tend to have other psychical disabilities other than just the eyes and
> ears.
>
> --S.W.
>
> On 3/21/2014 4:05 AM, April Brown wrote:
>> 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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> --
> *~Shadow Wolf~*
>
>
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-- 
*~Shadow Wolf~*