Daughters distress

[Jo dodds]

Hi, my daughter is 13 and was diagnosed with KC last august. She has had xlinking on both eyes with very positive results. Her corneas have flattened slightly and vision with glasses a little bit better- all good. The problem is her rgp lenses. Just had an appontment today and she has been told that there is very little difference between her vision with lenses and with glasses and this is unlikely to change. She is very upset as although she will only be starting to try and use the lenses from now on she was really hoping for better vision with them. She is very academic and a keen cricketer and she does struggle to to see on a daily basis. Whilst she wants to wear lenses for cosmetic reasons, the main hope was that her vision could be improved. I feel so sorry for her as she is so uncomplaining, and this news was devastating for her. Any advice or suggestions?

[GarethB]

Hi Jo

If I were you and it was my daughter, I would ask for another lens to be tried. There are so many lenses to choose from yet some optoms still use RGP's and nothing else and if that doesn't work, they just give up. There are hybrid lenses, sclerals, soft lenses and so on.

Over the past 8 years or more I have attended many contact lens workshops and probably most that I meet that have had crosslinking have found a soft contact lens for irregular cornea to give more than an RGP and to accomodate the changes in the cornea that cross linking produces. It was a surprise to me when I was talking to people that have been cross linked that in some cases their visionw as still changing after 18 months because the cornea was still settling. They found that as I did when I stopped wearing RGP's and changes to soft contact lenses that they accomodated the subtle corneal changes and gave good vision. in most case they had to push the optom to try them on these differnt types of lenses and now get vision better than they ever had before and amazing lens comfort.

As I tell peole on these forums, the only way you will know for sure if a lens may work or otherwise it to give it a go.

[coley456]

Hi Jo,

Im 19 an had KC now for 4 years. I know how your daughter must be feeling as im a rugby player and unable to wear my lenses whilst playing (For obvious reasons) What I would advice is to try other lenses. When you are first diagnosed you are fitted with horrible small RGP lenses. I remember mine and i could never wear them. Ask to see some more lenses such as hybrids, scleral and bigger RGB lenses. As stupid as it sounds the bigger then lens then the more comfortable it is. The reasoning behind this is the coloured part of your eye contains the nerve endings, whereas the white of your eye contains next to no nerve ending, therefor a contact lens that can sit on the white of your eye (A bigger lens) will usually tend to be more comfortable. As for the vision, there are different strengths of contact lenses and unfortunately it is trial and error until you get it right. Your optician cannot simply fit your daughter with the most powerful lens and be done with it. Therefore trial and error is the only way, just something that has to be put up with! I would say as your daughter has had xlinking then keep calm, the condition is unlikely to worsen so take your time and just keep going until you get the right lenses.

Lewis