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Emmalina888
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Posts: 3
Joined: Fri 10 Sep 2021 4:57 pm
Keratoconus: No, I don't suffer from KC

New here

Postby Emmalina888 » Sat 11 Sep 2021 6:24 am

Hello!

My name is Emma and my son Harry (13) had a hospital appointment yesterday after his usual optician noticed an ‘anomaly’ on a routine eye test at the end of last year. Because of Covid, Harry only just got this appointment at the hospital yesterday. The ophthalmologist said he thinks Harry has Keratoconus in his right eye but he has to go back within a month or two for further tests. Harry is very worried and anxious about this and we were wondering if anyone could give us any advice/supportive words/ideas for questions we should be asking at the next appointment? I’m pretty worried about everything too, and I feel so guilty that I didn’t push the hospital more to get him an earlier appointment- I feel so much time has been wasted where we could have been getting treatment and maybe this long wait has made his eye worse? Also, his left eye (the one without suspected Keratoconus) is his ‘bad eye’ sight wise but the right one (Keratoconus) is his good vision eye. Sorry for rambling on but I’m so worried. Any advice would be hugely appreciated. Thank you. Emma

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Anne Klepacz
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Posts: 2171
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New here

Postby Anne Klepacz » Sat 11 Sep 2021 8:22 am

Hello Emma and welcome!
Yes, it's scary being diagnosed with a condition that most people have never heard of, but these days the prospects for keratoconus are good, with a treatment called crosslinking which can stop it progressing. What the hospital will do is to monitor your son's eyes for any changes by doing scans of the eye. And if there are changes over a 6 month period, they will probably offer him crosslinking, The changes in KC eyes are usually quite slow, so your wait for a hospital appt because of Covid is unlikely to have affected things. Have you seen on our home page events ticker that we have a Zoom meeting on 9th October when Professor Frank Larkin of Moorfields Eye Hospital will be talking about the results of a clinical trial of crosslinking in children? Do join us for that.
You don't mention your son's eyesight affecting his schoolwork so I'm guessing it's mild enough not to be making a difference. But there's a leaflet about supporting students with keratoconus that you can download from our website https://www.keratoconus-group.org.uk/in ... n%20Sheets
and give to his teachers so that they are aware of how they can help.
And if you'd like a copy of our booklet about KC which is written for us by Moorfields specialists, just e-mail me anne@keratoconus-group.org.uk with your postal address,
I'll move this so that it also appears in the general discussion forum where more people will see it and give you and your son reassurance.

Emmalina888
Newbie
Newbie
Posts: 3
Joined: Fri 10 Sep 2021 4:57 pm
Keratoconus: No, I don't suffer from KC

Re: New here

Postby Emmalina888 » Sun 12 Sep 2021 9:10 pm

Thank you so much for your reply, Anne - this has made me feel a lot better and reassured, I will read this to Harry aswell - I didn’t know about the meeting so we will definitely join - thank you for letting me know! The booklet also sounds great - I’ll pop you an email.

At the moment Harry’s eyesight isn’t giving him any problems with school work luckily, so that’s a positive.

Thank you again so much for your message - it’s great to know that this support group is here.


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