UK Keratoconus Self-Help and Support Association

Hi everyone am a complete noob to this site! But I decided to join this site and try and share my story and get some feedback from you all.
I'm only 25 years old and my optician who has been our family optician for years when I was 24 determined that I had an abnormality with my cornea.
He told me he thought it was that I was going blind or had an eye disease which at 24 was devasting.
Anyway eventually i got referred to hospital who told me it was nothing of the sort!But i had a common in 'south indian' people eye disease called 'kerataconus'. When I heard or said this word it sounded like something pretty bad and when I told people they would stare at my eyes or to seem think I was some diseased person. I asked how I got it and was told different things by different doctors, the 1st doctor told me its from rubbing your eyes as a child too much. The second doctor said its if you get punched in the facial area its an eventual reaction to trauma in the eyes...and the third doctor told me that theres no scientific findings to know exactly what causes it.
I've since been going to hospitals reguarly and i've struggled to put on the contact lens as going from none to contact lenses in both eyes (yes both my eyes have this although my left is significantly worse...was a huge change!.)
But with the help of a good hospital ive done it and although i feel no difference in my vision am told theres a slight difference.
Being a university student I have to look at powerpoints all day and hand type work, IT doesn;t seem to go hand in hand with kerataconus and i often find my eyesight going halo/blurry when being at a PC for a few hours. So I decided to seek help and I got told I qualified for 'disabled students allowance.' I got this and they gave me a specalist laptop with kerataconus friendly text reader and writer called 'zoom text' which has helped my confidence and writing abilities and made using computers easy again!
However this year I have to give back all the equipment to the university and DSA organisation as I graduate university!
I wondered..how many of you have qualified for PIP with kerataconus?

Hello and welcome!
To answer your last question, we do have some members who qualified for DLA (the benefit that is now being replaced by PIP). The rules for PIP are more demanding, so I don't know if anyone here has managed to get that - I too, would be very interested to hear from anyone who has.
Well done on getting DSA and all the very best with your graduation. You should be able to get the same sort of help you've had at uni when you start working. Have a look at the leaflets you can download www.keratoconus-group.org.uk/sitev3/publications.html about KC and work. And to get help with adjustments at work and help with PIP, do contact your nearest Action for Blind People team. That's a charity that deals with people with all sorts of eye problems and has employment and welfare advisers www.actionforblindpeople.org.uk and has offices in a number of English cities.
Keratoconus is a young person's condition (unlike most other eye conditions) and is usually diagnosed in the teens or early twenties so you're not alone! And it is more common in people with an Asian sub-continent background (around 1 in 500 as against 1 in around 1750 for the general population). And your 3rd doctor was right - there's still too little understanding of what causes KC, though there seems to be a genetic factor and a lot of research going on.
We have lots of information we can send you, including our booklet on KC and a DVD of our 2013 conference which covered various options including the large range of contact lenses now available for KC. Just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put them in the post to you.
I'm glad you've found us - you'll find lots of people with similar stories to yours here.
All the best
Anne

thanks anne! yes am hoping to here from some successful current PIP claimers with kerataconus! As am thinking to claim PIP but am unsure of if its worth it

Hey welcome to the forum.

Has anyone else heard of keratoconus coming from a trauma of being punched in the face? I got attacked years ago and suffered severe bruising to the face including a broken nose and cracked teeth... if this relates back to that as well that'll make it even worse I think!

There was quite a discussion on that topic in the early days of this forum viewtopic.php?t=1451
which didn't really reach any conclusions. And there doesn't seem to be any evidence since then to link that sort of trauma to KC. Of course, KC is a young person's condition and young men are also the group that is most at risk of violence, accidents etc. A few of those young men will go on to develop KC. So my hunch would be that it's most likely to be coincidence. But who knows?

Interesting read, thanks for the link. I also came off my bike when I was a teenager and ended up in hospital with concussion and memory loss (wasn't wearing a helmet, whoops) my head's been through the wars a bit lol. Shame there's no concrete evidence either way...

Sorry to be negative but the liklihood of getting PIP for KC alone is very remote for 3 reasons;

1) Changes to descriptors and levels and welfare reforms (cuts)
2) There are fully blind people who are losing their benefits to help them live/work. There are even terminally ill people being found 'fit for work' and denied their benefits. Much of this is kept out of the media so many people are not aware of just how bad things are in terms of applying, the level of evidence required, and how some people have been left destitute.
3) Ophthalmogists are unlikely to help with the evidence, they're even reluctant to register people who fit partial sight/legal blindness because of the 'scrounger' rhetoric.

While the chances of getting PIP for KC are probably low, professional advice from a benefits advisor from a charity like www.actionforblindpeople.org.uk or a local Blind Society can be helpful. I know some of our members have had this sort of help to get DLA in the past. And if anyone is applying for PIP, have a look at this link which gives details of a research study looking at how people with a visual impairment fare when applying for PIP.
http://www.vision2020uk.org.uk/news.asp ... 0100050006