UK Keratoconus Self-Help and Support Association

Linda, 11 seems VERY young for crosslinking. At the recent European keratoconus conference in Toulouse, even the pioneer of this procedure from Germany gave 12 as the lower age limit. And many specialists would be reluctant to do it this young. Hopefully your son will find his contact lens gives him...

Sweetie - have you downloaded the Keratoconus At Work leaflet? Access to Work (through Jobcentre Plus) will pay 80% of the costs of any specialist equipment recommended through the workplace assessment. As your study is an integral part of your work, I would have thought that would apply for any hel...

Becky - I hope it all goes really well. I've sent you a PM.
Anne

Hi Lizb, If your registrar has already referred you to Manchester, then hopefully you won't have to wait too long. But as Andrew says, you could ask to see your consultant, or, as Lynn suggests, ask your GP to refer you. A lens option you don't seem to have had offered to you so far is scleral lense...

Hi Waseem, You'll find information about prices of collagen cross linking on a thread called 'C3R and Intac prices' on this forum. There are also a few hospitals now running NHS trials of this procedure - Moorfields Eye Hospital and St Thomas's Hospital in London, and King Edward VII Hospital in Win...

Hi Sweetie - sorry you're having such a tough time just now. I'm sure others will come up with 'techy' solutions which can help. But also, Libby mentioned the Keratoconus at Work leaflet where you'll find details of Access to Work. If you get a workplace assessment done through that, they should be ...

Sorry Johnni - didn't mean to panic you! But I'm sure most of us have been guilty of not following all the instructions about using solutions sometimes (and I include myself in that) and although we mostly get away with it, it's really not worth the risk! Nothing I've been able to find on the net an...

Hi Johnni and welcome! As Michael says, the risk with tap water is infections. There is a particularly nasty bug called acanthamoeba which may be in the water and infection with this can lead to blindness. If you've now stopped using tap water, then you won't have done any harm. But the message to e...

Hi Piper, The scenario you describe is exactly what I do (grafts in both eyes). I wear RGPs during the day, then switch to glasses in the evening to give my eyes a break. I always ask for a refraction at the end of the day, so that my eyes are being tested for glasses in their 'moulded' state so tha...

Hi Anne,
It's really good to hear that everything is going so well (and congratulations on being so brave!) I hope you now have a great Christmas - and Happy Christmas to all you other forum users too.
Anne