UK Keratoconus Self-Help and Support Association

I just wanted to say that it is great that we have got somewhere where we can discuss the problems that our kids are suffering from.

I hope that we can use this area frequently to help and give each other support.

Although in our case only our middle child has a problem. She attends University, anyone know what help she should be recieving. Our ignorance is.... well.

Hello Kevin
I was given alot of information regarding KC from Anne when I originally joined the group. My son's optician and consultant have also been very helpful.

I suppose the problem is that each person suffers in a different way, even though they are still suffering with KC. We can only help them and make sure that they have the right support from everyone they can.

I wish your child all the best for their continued studies in uni.

A great idea - good to share anxieties and possible solutions to problems!
Kevin - all universities should have a team (variously titled) which deals with students with particular learning needs. If your child approaches them they should discuss her needs, and then put any necessary provision in place and advise her tutors. E.G. a visually impaired student I work with (not KC) has materials provided in a special format, gets extra time in exams and can ask for extended time to submit assignments, receives a Disabled Student allowance to help with special computer equipment and software and has a number of hours support from another student who is paid to help with library research etc. It's probably worth your child making contact with the appropriate people, (even though most of the time there may be no problems), just to get on record that there might be times when difficulties could arise.

Thank you for your responses. I have just advised my daughter who she needs to approach in Sheffield to be asessed for DSA. I am not sure she will take my advice.
Using her own initiative she has discovered the consultant in Sheffield is more helpful than at home in Wiltshire.

I have a son with Down's sydrome. He is now the proud wearer of two sceral lenses which have improved vision A LOT.
Would be pleased to hear from anyone
or pass some ideas on.

Kate

There is a post from Mon 13/9 on the general discussion forum, which you may be able to help with, it is from Karen W, not sure if you have seen it.

Thought I would send this little note hoping you would get a prompt from the forum.

Hope Dales is still doing ok with his lenses.

Best wishes, Susan.