[nfb-db] Usher 3
Trish Hubschman
palhub at optonline.net
Fri Mar 21 16:18:32 UTC 2014
I didn't know that. My mom went with me to the genetic doctor. They asked
a lot of questions about her side of the family, but not too many about my
father. I just figured that was because he wasn't there.
Trish
-----Original Message-----
From: nfb-db [mailto:nfb-db-bounces at nfbnet.org] On Behalf Of Shadow Wolf
Sent: Friday, March 21, 2014 12:06 PM
To: NFB Deaf-Blind Division Mailing List
Subject: Re: [nfb-db] Usher 3
Darlene,
Although I'm no expert on Geneticism. The latest research on genetic
mutations point out that women are the sole carriers of these mutant genes.
The genes are passed onto the offsping from the mother side. The geneticist
I spoke to often asked me about my mother, rather than my father. Because I
have RP, and if I had a child, chances of my child having RP is slim to
none. Because it's not passed through the male genetic code. The child will
developed RP if the mother has it. This is why mothers are generally tested
to determined if they have certain genetic mutations in their lineage (blood
line), that can predict the child's disability at birth.
--S.W.
On 3/21/2014 8:50 AM, Darlene Laibl-Crowe wrote:
> 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.
>>>
>>>
>>>
>>> _______________________________________________
>>> nfb-db mailing list
>>> nfb-db at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-db_nfbnet.org
>> --
>> *~Shadow Wolf~*
>>
>>
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--
*~Shadow Wolf~*
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