[nfb-db] Usher 3

Delcenia Brown delcenia at prodigy.net
Sun Mar 23 20:01:43 UTC 2014 

Yes, education is the key.  I was label as selective hearing and having an 
attitude on top of just losing my mother. Dad just did not know.
Delcenia


-----Original Message----- 
From: Darlene Laibl-Crowe
Sent: Friday, March 21, 2014 11:50 AM
To: 'NFB Deaf-Blind Division Mailing List'
Subject: Re: [nfb-db] Usher 3

SW, I didn't say 'congential heart failure...I said 'congenital heart
conditions'  I wasn't referring to any specific condition.  I've heard that
some have been born with these genetics.

The only other person that I know that has Usher is my brother who has been
deceased since 2000.  He and I were the only ones in our family to have
Usher.  We went back five generations on both sides of my parents and no one
with hearing loss and/or vision loss.

I've read that in order for a child to have USH, both parents have to have
that defective recessive gene when the child is conceived.  And if that is
the case, then 1 out of 4 of the children will get USH, 1 without and 2
could be carriers.  There were four of us, my brother and I both had Usher
and my sisters don't.  I also have many,many cousins, nieces, nephews who do
not have any hearing or vision loss.  My sons do not have it and nor do my
grandchildren.  So who to say when someone down the line will be the next
USH in my family.

My parents were clueless when my brother and I could nto speak right and
assumed it was normal.  Didn't realize it until my first grade teacher
pointed it out to them.  They had no experience with hearing loss or vision
loss.  So when I was diagnosed with vision problems at the age of 28, it was
a shock to my whole family.  If I hadn't gone to the eye doctor because I
was having problems with seeing things while driving then I would have never
known.

Looking back over my childhood, I see many signs that should have alerted my
parents of the vision issues and  my brother, too.  I was constantly
tripping over things or knocking over the glass at the dinner table.  No,
they assumed I wasn't paying attention.  When in reality, it was because I
didn't see those things.  My mom even used to joke that my middle name was
'Grace' and make fun of my clumsiness.  She didn't know and that is what
happens when people don't know.  Education and awareness has brought
awareness to parents nowadays of what to look for in their children to alert
them of certain situations.

It happens!

(smile)
Darlene

-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of Shadow Wolf
Sent: Friday, March 21, 2014 11:11 AM
To: NFB Deaf-Blind Division Mailing List
Subject: Re: [nfb-db] Usher 3

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~*


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