Havering local group

[Cassandra82+]

Hello KC friends, My daughter is 20 and a KC suffer. She’s amazing and very strong. Since she was diagnosed at 16 I have been constantly scared for her and her future. It’s a horrible feeling and unless your living it people don’t understand. So I am reaching out to other parents and sufferers. Maybe you want to chat about your experiences, vent or simply connect with someone who understands. I look forward to chatting to you. Cass

[Anne Klepacz]

Hello Cassandra,
It's good to see you posting again, after the very moving post you made here last year. But what a shame that you missed the Zoom meeting we had on Saturday where you could have connected with others. We'll be having another one in July, so do look at the home page of our website where all events are advertised. We're very much hoping that we'll be able to return to face to face meetings for our members later this year. But until such time, we hope to continue with meetings on Zoom. And of course, this forum is another way of keeping in touch with other people. I hope your invitation to chat isn't restricted to people in Havering! The beauty of the internet is that it doesn't matter where people live and that's important for conditions like keratoconus, which aren't very common, so it's often hard to meet other people with it. And if you're not already on our mailing list for newsletters and other updates, do e-mail me at anne@keratoconus-group.org.uk There's no charge for joining.
I hope people will respond to your invitation to chat. To get the ball rolling, a very brief summary of my experience is that I was diagnosed 40 years ago when my KC was already very advanced (I was already wearing rgp lenses for what I thought was just bad shortsightedness so KC wasn't picked up until I had trouble seeing out of my lenses). I carried on working full time in contact lenses which now came from Moorfields, but eventually needed corneal transplants in both eyes. They gave me my life back and although I still needed lenses for best vision, I could now work full time AND have a life outside work too! When I was diagnosed, there was no internet and no information about KC so anyone with the condition felt very isolated and alone. Fortunately now there's plenty of information to be had on the internet and from hospital eye clinics. But it can still be hard to get diagnosed early and get on the right track so that the condition doesn't blight teenage and young adult years. And it's not any easier to explain to other people what keratoconus is and how it affects us. So we still need places like this where people can talk to each other and support each other.

[space_cadet]

Just thought Id say hi, my story isn't one that is typical though
I'm Lea I'm 38 n a parent to Remi who is 9.5 months n Jemima who is nearly 8.5 years, my KC was diagnosed in 2009, but by 2010 Id had a cornea transplant in my then worse eye it failed n subsequently I was registered severely sight impaired aka legally blind due to my KC. I had a host of issues along the way, continue to have som eincluding corneal filiments and extream dry eye which nothing touches. As I say tho my story isn't typical.
I completed a undergrad degree after my diagnoses, begun a masters degree twice but both times had to put it on hold due to falling pregnant.
I don't currently work as am here fo rmy kids.
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