UK Keratoconus Self-Help and Support Association

bryan williams · Postby **bryan williams** » Fri 31 Mar 2006 5:14 pm

hello, my name is bryan. i only found this web site few days ago. i have suffered with keratoconus for 8 years now(since i was 18yrs old). i had a hospital appointment on tuesday, and they have told me i now have to start to wear the 23mm scleral lenses(i have been wearing the 8.5mm lenses for 8 years now! i am very shocked and a little upset at the size of them! but reading posts and the infromation on the site i know i am worring about nothing! this post is not from for me it is for my mum. she has not taken it very well(she didnt when it frist started), and is qutie upset! i was just wondering if there are any other parents that can give me to give her some adive to cope! i have lived with it for 8 years, and am not worried! i just worrie about mum worring! thank you..

Postby **John Smith** » Fri 31 Mar 2006 5:40 pm

Hi Bryan,

In the words of Douglas Adams: "DON'T PANIC".

Now that may not be enough to appease your mum, I'm sure. But you can tell her of the problems you've had with the corneal lens and how they'll be eased by the scleral lens. No dust, no falling out, and a lot less pain.

They are a little frightening to look at when you first get them, but explain how they are that size to bridge over the sensitive cornea, and they are helping to keep yourself independant.

You can tell her that for most people, a scleral is as far as they need to go. You won't necessarily need a graft - a number of optoms do say this without thinking, but it is the rare patient that needs to go as far as a graft.

I'm sure others will fill you in with some statistics.

In the mean time, be calm and accepting of the situation, and I'm sure that your demeanour will gently be picked up by your mum too.

Amarpal · Postby **Amarpal** » Fri 31 Mar 2006 5:41 pm

Welcome!

Well, Im not a parent, but my mum worries just the same about KC. I try to explain to her that KC is managed fairly well, but as soon as I say anything about my eyes being sore etc, she gets worried! I suppose its just a 'mum thing'!

jayuk · Postby **jayuk** » Fri 31 Mar 2006 5:57 pm

Bryan

Get your mum to read some threads on this forum relating to KC and Scleral lenses....and hopefully that should ease her mind.......it can be worrying for parents and sufferers alike...but once information and knowledge has been assimilated...things do get better...

J

GarethB · Postby **GarethB** » Fri 31 Mar 2006 6:45 pm

Bryan,

I have had KC for 20 years and it has never held me back. Once my parents saw that I passed my A levels despite KC and was looking aftre myself just fine as a student in london registerd partially sighted there worries diminished.

Our parents will always worry, but get your Mum on this site to do some posts and we will answer her questions.

One thing you can say about us is that we will not hold back, we tell it as it is so you and your Mum will get balanced unbiased responses.

Alison Fisher · Postby **Alison Fisher** » Sat 01 Apr 2006 11:00 am

Hi Bryan

My parents (particularly my Dad) went off at the deep end as well.

I ended up supporting them instead of the other way round which was very 'frustrating' at times. This was a long time ago though, and we didn't have much information about KC which allowed their imaginations to run riot which made it far worse.

I'm going along with everyone else and saying that you should get her to read this place, but be patient with her. I'm a parent myself now and worrying is something that goes with the 'job'.

Jacqueline Cheetham · Postby **Jacqueline Cheetham** » Sat 01 Apr 2006 11:44 am

My parents still worry about my KC, especially at the moment as I am having a tough time. I'm 45 and my Dad is 76 and he wakes up in the night trying to think of different ways to help me. Yesterday he suggested he tried a lens in his eye to see if it makes his eye go red... I don't think we will be doing it.... I think information is power, so get your Mum to ask on here all her questions, she won't stop worrying, thats her job. But it will help her.

Postby **Andrew MacLean** » Sat 01 Apr 2006 1:43 pm

Brian

I found that the best way to overcome my own mother's tendency to worry was ust to make it plain that I was getting on with things. This is not to say she stopped worrying: mothers have a sopecial license to worry about their children (grown up or not). But she coped better because she knew that I was coping.

Andrew

by the way: Welcome to the forum

Alison Fisher · Postby **Alison Fisher** » Sat 01 Apr 2006 3:30 pm

Jacqueline, your dad and mine sound virtually identical. Before mine retired he was a printer. He made me some eye charts at work and every single time he saw me out would come the eye charts so he could gauge how well I was seeing that day. It was all too much and I ended up fibbing to make him feel better. It was stress and pressure I could have well done without.

Jacqueline Cheetham · Postby **Jacqueline Cheetham** » Sat 01 Apr 2006 8:43 pm

Alison, Sounds like our Fathers' are both practical men too. He's drilled holes in eye patches for me. He drives me where ever I need to go. But this beats the lot so far. We go swimming once a week, I have perfect sight underwater, with a face mask. Plus he says it makes me feel better to go which it does. Anyway, Easter hols coming up, the pool have reduced the time allowed for adults to swim. But he has managed to convince the manager at the pool that I be allowed to go in the 50+ session, I'm not proud as long as I get a proper lane swim in I'll go. As far as I can work out, he told the manager that the only time i see perfectly all week, is under water, which is true. I really didn't want to know more. Fathers thank the Lord for them.

hi

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