Hi Luke & Manda!

Thanks for your messages. We are another FEVR family in the UK. My son
Arthur is nearly 3 years old and has (we think) the recessive form of
FEVR. We don't yet know what level of vision he has but Prof Moore (who
we see at Moorfields) has said that it's going to be around 1/20 or
less. Arthur seems to manage amazingly well at present (goes to a normal
nursery 4 days a week) although he does get frustrated sometimes when he
can't do something he wants to with his toys.

It's very enlightening to hear how you are coping several years on and
to hear you talk about the time when you realise that you won't be able
to do all the things that other people can do. We are hoping to be able
to help Arthur as much as possible when he comes to that realisation
too. I suppose one way of looking at it is that no two lives are equal
and that each of us has to work with a different set of advantages and
disadvantages. I like to think that the more disadvantages you have to
face, the more chance you have to be a "hero" (think of any movie and
all the trials and tribulations the good guys are put through).

Luke, I followed the link you sent to the article. I studied science at
university so feel reasonably confident with this sort of material. I'm
no expert, but I don't think this sort of thing will be able to benefit
Arthur. Arthur has bilateral retinal folds, meaning that his problem is
not the loss of retinal cells, but rather that the retina has folded on
itself thereby obscuring the central macula which is the part of the
retina which gives you detailed vision. This takes his visual acuity
down from 100% to 10% for a start (my understanding of the situation).
This therapy would seem to be potentially beneficial for people
suffering blindness from macular degeneration - who tend to be the
elderly and diabetics. Don't know if this helps at all?

Hope this message gets through.

All the best to you both,

Pippa


--- In FEVRnet@yahoogroups.com, manda stenson <mandshere2000@...> wrote:
>
> hi luke,
> my name is manda and i live in derbyshire in the uk, i have a son
called quinn who will be 10 on feb 12th.......quinn was born with fevr
also and he is registered blind, he does have a small ammount of vision
and he does well with this, we are having lots of problems at the moment
with his behaviour etc, as he is in denial of his sight problems and
trys so hard to act as though he is full sighted, which as you can
imagine makes him so frustrated and quite aggressive.
> quinn is also under prof moore, he sees him at great ormond street
hospital in london.
> I also find it a big problem with prof moore, he does,nt seem able to
answer many questions on fevr, and i find it so frustrating as he is
supposed to be the best in the uk on fevr.
> I would love to chat more with you as i am sure we could help each
other.
>
> manda stenson
>
> trillianz1990 lukeshepherd@... wrote:
> Hi. I'm 17 years old and have had FEVR since I was born. It's never
> really affected me much and I've never had much of a problem with it,
> up until when i was 15/16 when it hit me that i couldn't do the same
> things as other people my age. Most of my friends were getting mo-peds
> etc when I couldn't.
>
> My vision is around 4/20 left and 6/20 right. As I'm now 17.. It's
> really hit me that I'll never be able to drive and It's only now that
> I've decided i want to look into FEVR more.
>
> I'm under Moorefields eye hospital in London, but I haven't found them
> to be that helpfull the last few years. I've been put into the
> childrens ward under Mr Moore when i should have been transferred to
> the adults ward. When I go next, I'm hoping to get a few of my
> questions answered as i've never really asked before.
>
> I've been researching and come accross an article about stem cell
> treatment thats being researched and meant to cure blind people. I'm
> wondering if this is going to affect FEVR patients, or its more for
the
> elderly/others. The article i've been looking at is
> http://news.bbc.co.uk/1/hi/health/6120664.stm .
>
> Sorry if I've posted this in the wrong place. It's my first time on
> these boards and I'm just getting to grips with things.
>
> Thanks
> Luke
>
>
>
>
>
>
> ---------------------------------
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