UK Keratoconus Self-Help and Support Association

hi

im new to this forum and just wanted some reassurences about the problems im having, i have had keratoconus for four years and have spent 2 years waiting for a graft. the keratoconus is eqaully severe in both eyes. This time last year i was registered blind whilst studying at uni. It may sound silly but didnt realise my vision was so severe, i was failing my course because i could hardly read. a year on im finding it difficult to find work and my confidence is low. has anyone out there had the same problems.

thanks presh

Presh

Welcome to the forum!

You mentioned that you have had KC for four years....was that when it was noticed or did you have it alot longer before?

Reason why I say this is because going from 0-2 years from normal vision to graft is unheard off.......also going from perfect vision to graft in 0-4 years is also not common

Do you use any glasses and/or contact lenses?

J

Presh - welcome to the forum!
Are you using Access to Work to help in finding work? Access to Work advisers work in Jobcentres and will assess any special needs you have. The employer will then get 100% of the costs of any special equipment needed for you to do the job (80% for an existing employee). Do PM me or e-mail me on anneklepacz@aol.com if you'd like our Keratoconus at Work leaflet which gives more details.
And no, you're not alone - I'm sure you'll get replies from other students and ex-students who have struggled in the past. I hope you don't have to wait too much longer for a graft.
Anne

Presh,

By the time I started my A-levels I was gettingr ready for a graft, I lived just outside Durham and only waited a couple of months for my graft back in 1989 when the first was done.

The college provided me with large exam papers and prior to this, I was given photocopies of diagrams the teachers were refering to. Schools back in 1989 did not have computers and multimedia like now.

My first graft was done just before I started Uni and I was registerd partially sighted while the right graft settled and the left eye was bad even when corrected. You will love the degree I was doing, environmental microbiology lots of looking down microscopes, well not for me.

I was alowed torecord the lectures si I could make notes at my leasure and all overheads were provided for me as a printed copy. By the start of the second year i had sight back in my right eye and the graft had been done on my left. The free time between lectures was when I cought up on the first years practicles with students the year below. Year three did an industrial placement and year 4 was sponserd by the governmnet whose labs I worked in the preveous year. got an upper second which I was dead please with.

I have always been a pushy so and so, so if there was something I found hard i would find a way round it and make a general nusence until i got the stuff I needed to be on an equal with the sighted people.

Now I work, te knowledge of access to work was really useful when my KC took an extremely rare post graft turn and the company I work for got the computer stuff i need for when i can not see.

Get intouch with Anne as the information is really useful and it helped my employer understand my situation and together we came up with a solution to do my job pretty much as if nothing happend. There is lots of information to go through and we are all here to help eachother through the highs and lows.

From diagnoses with KC to needing and receiving a graft was less than 12 months. The year before I was diagnosed with KC, in a routine eye test I was getting perfect 6/6 vision.

I do know one guy in the Birmingham area that does not want a graft and he is now registerd partially sighted and he has adapted amazingly well both from an education perspective and work too.

Joining us lot is a great start and hopefully you will soon be on the road to employment and increased self confidence.

Let us know how you get on, both good and bad.

Regards

Gareth

Presh Ugbor wrote:hi

im new to this forum and just wanted some reassurences about the problems im having, i have had keratoconus for four years and have spent 2 years waiting for a graft. the keratoconus is eqaully severe in both eyes. This time last year i was registered blind whilst studying at uni. It may sound silly but didnt realise my vision was so severe, i was failing my course because i could hardly read. a year on im finding it difficult to find work and my confidence is low. has anyone out there had the same problems.

thanks presh

I understand your situation as I have experienced the same myself, but not on both eyes at the same time. You should get yourself on prority. Go see your surgeon and get the first graft asap.

All the best!

Presh

when I was registered blind I kept telling people that blindness was not at all like I expected it to be!

On the up-side, two years post graft I have very good sight in my graft eye and am expecting to have the sight restored in my left eye when they graft a new cornea into it this summer.

I am perplexed by the two year wait you have had to endure. Has there been any explanation? Which hospital? Perhaps they do not perform many grafts there ... it's hard to know.

Andrew

PS Oh by the way, which University? They should definately not be failing a visually impaired student, but they ought to be making 'reasonalbe' adustments to enable you to work with the minimum disadvantage.

A

My keratoconus was noticed four years ago by a keen opticians who pointed out a problem that was missed by several opticians six months previous , but i had to wait a year and a half to get seen at hospital in lancaster they couldnt treat me because they did not have the facilties. The Dr was overworked and abrupt and wouldnt fully explain what was wrong with my eyes, he just told me to get some contact lenses. so i went to vision express,they dont do hard contact lenses,round here (yeah im going to come accross a little naive).

They sent to a tiny community hospital in Workington Cumbria who sent me to another opticians who again sent me to a hospital that didnt have a decent eye department.
finally i went to an opticains who took £400 off me and gave me some badly fitting hard lenses, i was poor and couldnt travel the 100 miles from uni to the opticians so i ditched the lenses and decided to work with what nature had given me.

Obviously this was a rubbish idea, (I lasted 8 months) I was failing my course,(by the way the uni was fairly uncoperative because i didnt have any medical proof, they were dying to throw me out) so i had to beg my general practioners 3 times to send me to a hospital that had an eye department that could treat me.

Finally I managed to get into carlisle hospital, they regiseterd me blind on the spot, they thought i was mad because my vision was so severe in both eyes. (at this point i thought my vision was a just a little fuzzy) i was trying so hard to cope with life that i didnt notice.

I was put on a waiting list 2 years ago and i finally have a date for my op in march. The uni was gutted when i brought medical proof, they had to leave me alone. In terms of a job i live in the sticks and there is no decent transport the only way to get anywhere is to walk 4 miles along a
busy country rds average speed 70mph and
without pavements, even on a good day i cant cross it. so i was told by the job centre to sign of sick and get incapacity benefit, but they didnt give it to me because i didnt pay enough tax credits at uni.

Presh

Your story really saddens me...in that it got to that stage!

You REALLY need to be seen by an Optician....I am sure that you can be potentially treated with Contact Lenses and be given your life back!

I still say that in 4 hours of KC, its highly unlikely that you need a Transplant.......unless you have really agressive KC...

Tell me where abouts you are, and Ill see if I can locate anyone who can potentially evaluate your eyes for lenses.

J

This is unbellievably sad to read. I thought when you are diagnosed blind because of KC they treat you immediately. Certainly to give you vision back on at least one of your eyes. Are there no clinics performing urgent surgery in cases like this in the UK?

I wish you the best. Hope you get some proper treatment very soon!

Presh,

I agree with the others. This is terribly sad, and if you've even been registered blind, I'm quite shocked that you slipped so far through the system.

Have you tried appealing to get an earlier appointment? After all as Per says, your case is far more urgent than most!