[nfb-db] [Bulk] Re: Usher 3
Shadow Wolf
soulalibi at gmail.com
Fri Mar 21 17:03:33 UTC 2014
Darlene,
That makes a lot of sense. And I think you are right about that. Good
stuff to know.
Have a nice day,
--S.W.
On 3/21/2014 9:19 AM, Darlene Laibl-Crowe wrote:
> Yes, SW...I've heard that, too. Someone explained to me like this:
> Your genes have Dominant and Recessive...some RP have dominant defective
> gene which is carried down on line usually the maternal side but for Usher
> it is recessive defective which means both parents have to have that
> defective recessive gene.
>
> I, too, am not an expert and listen to others but the person who explained
> this to me was eye specialist. I had asked him about this because my former
> sister in law has RP, too...but she was diagnosed when she was 2. She has
> dominant defective gene RP...there si a difference.
>
> Okay, I gotta get off the puter...errands to run! Eveyrone 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 12:06 PM
> To: NFB Deaf-Blind Division Mailing List
> Subject: [Bulk] 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.
>>>>
>>>>
>>>>
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>>> --
>>> *~Shadow Wolf~*
>>>
>>>
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> --
> *~Shadow Wolf~*
>
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--
*~Shadow Wolf~*
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