Son with recent diagnosis

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shropsmum
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Keratoconus: No, I don't suffer from KC

Son with recent diagnosis

Postby shropsmum » Sun 19 Oct 2014 3:17 pm

Hi, never joined a forum before! my son who is just 18 has been recently diagnosed with Keratoconus in one eye. Perfect vision until a few months ago, can now only read the top two lines on the eye chart with the one eye. I have been reading a lot on the internet and I am thinking of taking him to see Mr Martin Watson at Moorfields to find out more particularly about CXR, as our local hospital doesn't offer it and from reading the consultant's specialities no one seems to have a particular speciality in this condition locally. Has anyone been to see him? or has anyone had CXR at a young age? that could give some advice. thanks

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CrippsCorner
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Keratoconus: Yes, I have KC
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Re: Son with recent diagnosis

Postby CrippsCorner » Mon 20 Oct 2014 10:15 am

Hi I have no experience with London based hospitals but I'd say get CXL performed ASAP, especially as your son is so young. Also, it's important to keep an eye (no pun intended) on his other eye, as 9/10 times keratoconus effects both.

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Son with recent diagnosis

Postby Anne Klepacz » Mon 20 Oct 2014 1:48 pm

Hello and welcome!
KC is most often diagnosed in the teens, so 18 is quite usual. Have spectacles or contact lenses been recommended for your son? As you've probably read, while CXL normally stops KC from progressing further, it doesn't restore vision to what it was, so he's likely to need correction of some kind even if he has CXL. Moorfields has lots of corneal specialists who can give advice. And if you'd like our information booklet on KC, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one, plus the DVD of our conference in Manchester last year which included a talk on CXL.
Anne

shropsmum
Newbie
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Posts: 2
Joined: Sun 19 Oct 2014 9:12 am
Keratoconus: No, I don't suffer from KC

Re: Son with recent diagnosis

Postby shropsmum » Mon 20 Oct 2014 7:41 pm

thank you Anne and CrippsCorner. Yes he was given glasses at Vision Express where the optician suspected he had Keratoconus, he doesn't find them to be a huge help, but another optician that I took him to for a tomography to confirm the diagnosis, (due to a mix up with the referral from the GP and a wasted appointment where they didn't have the right equipment to confirm diagnosis) she explained that because glasses are further away from the eye, they give limited improvement due to the cone. I have read a lot about CXL though of course there also seems to be potential problems if the cornea gets damaged. (the danger of the internet you read the good and the not so good :)


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