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Visual Imairment in teens

(2 Posts)
pinkmama Thu 08-Sep-11 14:56:56

Hi
I am reposting this here on NoodlesMam's advise smile

Hi everyone, I haven't been on here for many years! Sadly DD1 was diagnosed with Stargardts disease last week. We have been seeing eye specialists since March and knew the outcome was never going to be great, but the reality is proving hard to accept. Ruby's condition means that her eyesight, particularly her central, colour and night vision will deteriorate quite rapidly over the next couple of years and will most likely reach the point of being registered severely sight impaired before plateauing out. Initially I was relieved to discover that she will retain some vision, but as the days have gone on it doesn't seem like such a positive outcome. Ruby is ignoring it at the moment. I feel bad as I know there are people facing far worse, but I just feel quite lonely and isolated. Just wondered if anyone on here had experience of this condition or visual impairment in general. I think part of my upset is just fear of what the future holds.

Thanks

TheNinjaGooseIsOnAMission Thu 08-Sep-11 17:51:21

Hi pinkmama, not sure I can be of much use as my dd3 has had a VI since birth and is only 5 so we're not at your stage yet. My dd3 has a genetic syndrome and the support group has been fantastic, I would imagine there would be one for this and would be well worth getting involved with.

There's also your local sensory impairment service that you should get in touch with, they can usually be found on your council website, usually under education, you'll be looking for mention of a QTVI, qualified teacher of the visually impaired as your service may be called something different, they will go into school and offer support there and see what can be put into place. It may be worth making contact with the school senco if you haven't already.

Social services should also offer support as her vision deteriorates and can offer things like mobility training and any technology or gadgets she may need, as well as a card that says she has a vi. The optician at our eye unit does low vision assessments which is worth looking into as well.

There's also a few charities around that you might like to investigate, look, [[ http://www.nbcs.org.uk/ nbcs]], victa and of course rnib.

do try not to concentrate on the future, much easier said than done I know! Just concentrate on getting through one day at a time if you can. You often get a very clinical view from doctors about sight loss, they can paint a very bleak picture but there is help and positive support out there.

my dd3 has other sns as well as the vi but you wouldn't say she had a vi if you saw her, she gets on with everything and charges round like any other child I know. There are ways round things and your dd will figure out what suits her best as time goes on.

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