UK Keratoconus Self-Help and Support Association

this post is re my daughter Charlotte age 20 years. various other posts on here tell her KC journeyI just really wish for her sake that she could go back to glasses. she hates contacts and hates the feeling of them in her eyes. she tries so very hard and some on this forum will know of her story. also she has downs syndrome, so learning disabilities and behavioural issues go hand in hand so to speak. as i mentioned in another post she had an acute hydrops 2 days ago. we are now booked to see cornea specialist 11th Feb..

In an ideal world she could go back to specs, I know the peripheral vision is very comprised for her but surely specs would be better than nothing if the script could be totally spot on? how feasible does that sound? would it be doable I wonder? or am I being ridiculous? I will do anything to help her cope better with this. she's tried and tried for over 3 years with contacts and so patient. it breaks my heart that she is going through all this as well as having downs yet she is so happy in all other areas.

Specs will be better than nothing, but not as good as contacts, as the irregularity of the cornea is what causes distorted vision in KC. Spec prescriptions fluctuate frequently in KC, so frequent sight tests are advisable to give the best vision. The extent to which specs correct vision also varies according to the levels of astigmatism, and position of higher order aberrations which are caused by KC. The only way to tell what extend specs will correct is with a new sight test really

There's also cross linking. She could try hybrid or soft lenses for Keratoconus. She may find them much more comfortable than hard lenses, I know some of our members here do!

I use specs as a backup for when my eyes are too uncomfortable to wear lenses.

As has been said, the visual acuity is not bought up as good as with contacts. But they get me by.

pretty much expected those replies if I am honest. I know what's what really re KC and specs versus contacts. just looking for alternatives for Charlotte to use. something that's not going make her sad. given the choice between a daughter who can see better but who is miserable and a daughter who does not wear contacts but who is happy again. . . . . .well can you see what I mean? that's basically what we have at the moment here. very very hard decisions to make. i really do appreciate all your replies so please keep suggestions and advice coming our way. Angie and Charlotte x

we were told quite a while back that her left eye cone too steep for cross linking.
I certainly have lots to ask the cornea specialist on 11th Feb and the list is still growing. thanks guys on here x

Angie,

Charlottes mum wrote:given the choice between a daughter who can see better but who is miserable and a daughter who does not wear contacts but who is happy again.

I've just re-read some of your earlier posts from when Charlotte was happy with her contact lenses and preferred them to her glasses and wondered if her contact lenses were uncomfortable. I've had contact lenses that have been a text book fit and the optoms couldn't see why they were causing a problem. If Charlotte's lenses are causing a similar problem this could be why she no longer wants to wear them.

It might be worth asking if soft lenses would be suitable for Charlotte. Even if they didn't give her the vision of the RGPs it might be a good compromise as if her eyes did change slightly she wouldn't have the discomfort that can be caused by RGPs.

Lia

thank you for that. certainly another question to ask in clinic on 11th Feb when Char sees the cornea specialist. We really appreciate you taking the time to read and post.