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Reply | Forward Message #352 of 810 |
Re: [Stickler Syndrome ] My Story

Hi Tony

I have thought about this question, and as I have told other 'parents', the
people who
suffer most are YOU. As the patient we get the attention and the fuss,
unfortunately it is
you who feels helpless and unable to do anything.

It is not always a walk in the park as a kiddie with sticklers, there are some
unpleasnat
things with clefts and eys etc..... but

My vision itself has never been a problem in that I know there are things I
can't see when
others can, but you can compensate a little, such as on days out carry a
powerful
monocular, carry a magifying glass (tiny pocket one) the main thing is not being
able to
drive, this I believe is a handicap in life But nothing we can do, just get the
free bus pass!

As a child my parents encouraged me to be quite outgoing, I wasn't afraid to sit
at the
front in class or ask for the notes if I couldn't see the board, (didn't always
get them!) I
always asked questions, and if the answers weren't right I asked some more, help
your
little 'un to be outgoing, I have never been afraid to say "I can't see
that"..... and let her
have a reason ready for the smart arses! (I am partially sighted... hehe the
amount of times
I've made someone cringe.. deservedly>)

I do not feel that I am at a real disadvantage with my vision, but at the same
time that isn't
surprising, I don't know how anyone else sees.

Give your daughter every opportunity you can (as I am sure you will anyway) and
she will
make her way through life, there are hardships in every life, ours are just
different but
there is a way.... and one way or another we get there, our vision is what we
are used to,
we cannot imagine how it is for others and so then there has been no
comparisons.

I always say life is what you make it and a big part of making my life as
special and
wonderful as it is has been because of my wonderful parents..... you are here
asking
questions because you are obviously special wonderful parents already.

Lots of love and wishes
jane - in wet old Wales

BTW = I do horse riding because my folks were told I'd never play ball games...
"teach her
something where she doesn't have to see that much." - horses are my first
love..... horse
back riding is what I do.






Thu Dec 8, 2005 10:20 pm

laeticia_dem...
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Message #352 of 810 |
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Hi I haven't posted in a long while but wanted to pass on what I have learned regarding hip replacement. I am 38, was born with prs, cleft palate and poor...
laeticia_demorte
laeticia_dem...
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Dec 4, 2005
6:45 pm

Jane Thank you for sharing your story. I do have a question for you if you don't mind. My little girl has very low vision like you, but she is only 2. Have you...
Tony Sizemore
mackenziesda...
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Dec 5, 2005
12:05 pm

-Vision has to be checked regularly by retinal specialist my 8 year old is blind in left eye because it was not checked regularly I've had glasses since 2...
Nicole
angeleyes236...
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Dec 6, 2005
2:26 pm

I go once a year to have my vision checked by a very good surgeon, recommended by Moorfiels eye hospital in London, I used to go there, was lucky enough to...
laeticia_demorte
laeticia_dem...
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Dec 8, 2005
10:23 pm

Hi Tony I have thought about this question, and as I have told other 'parents', the people who suffer most are YOU. As the patient we get the attention and the...
laeticia_demorte
laeticia_dem...
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Dec 8, 2005
10:20 pm

Hi Jane Thank you for being so open about that. It makes me feel better about the future for my little girl. We have the same out look on how she needs grow ...
Tony Sizemore
mackenziesda...
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Dec 9, 2005
1:44 am

Hi Tony Horses are terrific and riding is brilliant because it keeps your bones and muscles strong. One thing to bear in mind, we have to be careful of bumps...
laeticia_demorte
laeticia_dem...
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Dec 10, 2005
6:59 pm
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