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KC Group Newsletter

Autumn 2003

Sandi's Story

Four years ago when Jo was 15, she came home from school one day and said that she wished the geography teacher would stop using a green pen on the whiteboard. She couldn't see it properly and the stupid woman wouldn't believe her. This was the beginning.

Our whole family had always had regular eye checks without any problems. I'm short sighted and I just thought that the same was happening to Jo, so off we went to the opticians, but it wasn't the same. The optician referred her, via the GP, to the eye clinic at the local hospital so that she could be checked more thoroughly. I won't go into all the ins and outs of this one, but let's just say it wasn't a visit to be repeated. Having been told that Jo had a rare eye condition called keratoconus, and that we must find ourselves an optician who could fit her with contact lenses, she was discharged. They didn't want to see her again until she reached the stage where lenses may not help anymore, which could be 5 or 15 years away, and then she may be considered for a corneal graft. This was scary. I took to the internet to find out all I could about keratoconus. My husband said that I was on information overload, but it was just a way for me to try and cope. Jo couldn't cope. She wouldn't talk about it to anyone. It was as if she thought that if she ignored it, it would go away.

Gradually my beautiful, bright, lively, outgoing daughter was replaced by a very frightened introvert who didn't want to do anything or go anywhere. She ended up on anti-depressants and visit to a child psychiatrist. I have to admit that I wasn't much help to her at this time as I soon followed her down the black hole
as we now call it.

Throughout the next year you could see Jo struggling to come to terms with what was happening to her and trying to get herself back on an even keel.

Slowly she started to acknowledge that there was a problem with her sight and started to let one or two of her friends into the 'secret'. She came off the antidepressants but for a while took to alcohol in a big way (another way to blot it all out, and if you're 'blind' drunk no-one expects you to see clearly do they?)

At school, having got through her GCSE's she was now taking 3 A-Levels but a quite rapid deterioration had started in her left eye. With numerous visits to various opticians going through the range of daily disposables, the kerasofts, the G.Ps, the Rose K's etc she had to give up one A-Level (Geography!!). She continued with Spanish and Psychology. Thank goodness for one of the deputy heads at college who was really great in trying to understand what Jo was going through, but even with him on our side, the psychology teacher refused to enter Jo for the exam because she'd missed so much work. (I have to say I feel the teacher was more concerned with her pass rate than any problems Jo had). I wish that the information sheet for schools and colleges had been around then, but I'm going to make sure that it is for the future.

Anyhow, this made Jo very angry and she decided that she was going to show them that they were wrong. We got the college to agree to enter Jo if we paid the fee. The old Jo started to return, she was working hard and playing hard.

She got her 2 A-Levels (an A in Spanish and a B in Psychology) and gained a place at U. W. E. Bristol to read Spanish and Law.

On a visit to the university I managed to convince Jo to come with me to the Disabilities Unit (I really wish they'd come up with some other name for these places, don't you?) to explain the situation and see how they could help. What a difference from our previous experiences, they couldn't do enough for her. The problem was now getting Jo to accept all that was on offer, because of course in doing so, once again she had to accept that she had a problem.

Jo's first year at university was a nightmare. We'd have phone calls from her all hours of the day and night. She couldn't settle in her house, she didn't like Law, and then the 'good' eye started to deteriorate. This was when I decided to speak to Jo's tutor, and guess what, she knew nothing about Jo's problems with keratoconus. I didn't realise but the Disabilities Unit will not pass on any information to the tutorial staff unless the student gives their permission. We were back to "I don't want anyone to know", "I don't want to be treated differently", "I don't need any help". I persuaded Jo to come back with me to the Disabilities Unit (good old-fashioned blackmail I'm afraid - retail therapy) and speak to them. Once again they were brilliant. Jo and I met with her tutor, a lovely Spanish lady who couldn't do enough for her once she knew the situation.

Unfortunately Jo was quite a bit behind and having more problems
with her 'good' eye. She came home in the February and told us she wasn't going back until the following September when she was going into hall and starting a new course to do Modern Languages with European Studies. Jo's just completed her first year, not without ups and downs. Conjunctivitis and asthma meant missing two exams, but she can re-sit without penalty and is happy to do so.
She can't wait to start her second year in September, and is already planning her year abroad, 6 months in Paris, 6 months in Madrid. I'm dreading it!

It was my first time at any meeting or conference to do with keratoconus and I did manage to get Jo to come with me (good old retail therapy). Neither of us knew what to expect but both of us thought it helped in so many ways. Listening to the speakers who gave us so much information and insight into Sandi’s Story
how to cope, and speaking to other people in the same situation was invaluable.

I have to say that Susie Nyman and Freddy Bull (who shared an entertaining presentation in the afternoon session) amazed both Jo and me. They've both faced real problems with keratoconus but have managed to work around them and have come out the other side. They've both used their own strategies to cope and shown that it can be done, it's not always easy, but they did it in their own way, in their own time.

I think that's what was really brought home to me at the Conference. It's what my daughter's been saying all along but I wasn't listening. She has to work out her own strategies, in her own time and I have to learn to bite my tongue and trust her more. So what if she's only wearing one lens, so what if she goes out with them in and comes back with them out, so what if her bedroom's such a mess that I'm scared she'll lose her lenses under a pile of clothes.

It's like so many other things when you're a parent, you have to let go and give them a chance to find their own way to cope and if it's not your way then so be it. It must be hard enough to come to terms with having keratoconus. I know it really scared me at the beginning and if I'm honest it still does. But, as Jo says "Mum, let me do it my way, right now I'm fine, just let me take one day at a time".

I'll try Jo, I'll really try.

A great big thank you to everyone at the Conference.

Sandi Sydenham
October 2003

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