UK Keratoconus Self-Help and Support Association

First things first - Merry Christmas to everyone - hope you had a good one!

I have been living with keratoconus for what seems like forever. I was diagnosed at around the age of 19 and I am now 43. I would be lying if I said it had been easy, it can be very challenging at times. I have Rose K lenses fitted in both eyes but due to a raised scar on the left cornea I am only able to use this eye for around 6 hours a day, therefore my right eye is my saviour and I try my utmost to keep it healthy and clean. I have however for the last couple of years been struggling reading, I never seem to be sat where there is adequate light. This is where I come to my handy new discovery. Whilst shopping for my husbands christmas present in Machine Mart (his idea not mine - i hasten to add) I noticed a LED headlight ( similar to what miners wore on their helmets but this light is attached to a elastic strap which goes around your forehead. There are two strength settings and it adjusts to whatever position you require. At £5.99 it was worth a try if it made reading easier. What a revelation - I can sit in any chair in the house now and still see the text - I must admit I have been a cause of a great deal of hilarity in our house - but at 43 I have developed a thick skin - my teenage children are extrememly embarrassed and have made me promise never to wear it when their friends are around. So there it is - it works for me and wondered if you could help any fellow KC sufferers. Got to go now - going to read my book

Libby

Hi Libby and welcome to the forum.

We often find starnge fixes for our KC. I usually have the problem things are too bright so I have some screen tint film I put over the page just to take the harshness out.

Did you also know there are little book lights you can get! They clip on the back cover of the book (works best on hardbacks) and is like a battery powerd angle poise lamp. Seen them advertised in the inovations catalogue that is often in the weekend papers and on occasion I have seen them in Betaware catalogues that get deliverd every so often.

Worth a thought if you ever want to regain any dignity

Thanks Gareth,
No i wasnt aware of the little books lights but will try to track one down, think it would be more acceptable to my family members
Libby

lol Libby. That's so cute, but actually a really great idea.

I have no consistency when I read. I turn my lamp on and off that many times, especially when I'm trying to study.

Often it will be too bright or glarey, so I turn it off.. but then it's too dark and I feel like I can't see the words.

Then it makes me that tired I end up going to sleep anyway! lol

Libby

Welcome.

Aids and adaptations for living with keratoconus will vary from person to person. I have a number of bits of kit which I need sometimes and which, at other times, is not olnly unnecessary but also unhelpful.

All the best

Andrew

Hi Libby
Don't know if it helps there is also a really good website for booklights at:
http://www.booklightsandgifts.com although they aren't cheap. A cheaper booklight can be fouind at
http://www.roamingfox.co.uk

But I bought one of those little clip on booklights recently that I think gareth mentioned from one of those "travel" stands you find in Boots and some department stores (where you can buy suitcase straps, travel wallets - you know the kind of thing?). It was quite inexpensive - about £4 - 5 I think. It works for me...on a good day!

Pat

Thanks everyone for your info, after 20 plus years of struggling alone you dont know how welcome it is to speak to someone who knows what difficulties we face.

Now I feel I have to tell you what happened to be yesterday. I returned from some serious retail therapy (well a girls got to do what a girls got to do), on my return to house was empty so I decided to go down to my husbands workshop to see if he wanted a drink. (my husband who was the main instigator of all the teasing I was having with regard to my headlight). Low and behold what did he have on his head but MY HEADLIGHT - the hyprocroscy of the man. He then had the cheek to tell me what a useful piece of kit it was and how he was going to buy himself one!. I sure he must have been blushing at being caught out - but I couldnt see as he had dazzled me with his light

LMFAO - that's a classic.. so typical though!
I would've snuck back inside and got the camera

Libby

It seems to me that, like most men, your husband is flexible enough to be able to find merit in things that he instinctively thought of little value, and then humble enough to admit that he had made a mistake.

Sounds like a pretty decent chap.

Andrew