UK Keratoconus Self-Help and Support Association

Hello I am new to the forum. My son was diagnosed with KC last year aged 15. Today at a routine check up his scan revealed that his condition had progressed to a point whereby he may be eligible for cross linking on the NHS but there is a waiting time of potentially 3 to 6 months.

Obviously I am worried to death and want to do whatever is necessary to save my sons sight, but I really don't know what lies ahead or what the best course of treatment is , or the options available either on the NHS or private.

Any advice would be really appreciated as this is a very worrying time.

thanks in anticipation.

Hi Nads,

Welcome to the forum.

Cross linking is intended to halt the progression of keratoconus. Cross linking is generally only performed when there is evidence that keratoconus is progressing and the cornea is above a certain thickness.

You may find it useful to read Moorfields' leaflets on cross linking and watch their video.

http://www.moorfields.nhs.uk/condition/keratoconus


Apart from cross linking contact lenses, rather than glasses, may be required to help your son see properly. There are lots of different types of contact lenses available for keratoconus and different lenses suit different people.

Do read our student leaflet that can be found at:

http://www.keratoconus-group.org.uk/pub ... aflet.html


Best wishes,

LIa

Thanks for the prompt reply Lia, I will look at the video. He currently is prescribed lenses, one soft one hard, but he finds the hard one uncomfortable so sometimes chooses not to wear them.
I suppose I need to weigh up treatment options with him once we know timeframes on NHS. Does anyone have experience of private treatment ?

Hard lenses shouldn't be uncomfortable so it may be worth getting the fit of the lens checked. It may also be worth asking if he could have a soft lens for both eyes. The vision might not be so good but it would better than not wearing lenses.

There are a few threads on the forum about cross linking and if you put cross linking, cross-linking or CXL into the search field above you will be able to read about people's experiences.

If you are in easy reach of London we have a conference in a couple of weeks.

http://www.keratoconus-group.org.uk/eve ... rence.html

This would be a great opportunity for you to find out lots about KC. But you would need to contact Anne now to be able to return a booking form in time for the conference.

If you'd like our information booklet on KC and join the mailing list for newsletters and other information, do e-mail your postal address to anne@keratoconus-group.org.uk (there's no charge for joining).

Lia