UK Keratoconus Self-Help and Support Association

Hi all,

Just wanted to post and say hi. I'm Scott, I'm 21 and got diagnosed with Keratoconus roughly a year ago I was told about this website by a lady at the Eye Hospital I went to.I'm now in my second year of doing a Law degree at University, but this condition has really affected me really badly.

I was diagnosed last year ago shortly after taking my first University Law examination, I couldn't understand why I was struggling to read the exam paper... I couldn't even read what I wrote for my answer. I was therefore extremely upset and surprised to be told I had this condition. I was more shocked however, to be told I passed the exam and received a 2:1... =)

I don't know how you guys feel but my life has never been the same since. I cried for hours when I received my first year results, I was so proud of myself (missed a first by literally 1%). My University has been fantastic. However after starting my second year, I now suffer now with depression and I don't have no where near as much confidence. Looking back at my life I was always so happy and full of life but now I feel this condition is really holding me back.

After a few visits to hospital and SpecSavers I am so scared of hearing any more bad news I'd rather not go. I have another appointment in early Jan but I don't want to go. I think it's gotten alot worse recently (I wear glasses). I don't know how to life with this condition. My family and girlfriend etc have been really supportive but it's not enough. I fear the unknown. That's what scares me, not knowing what the future will hold. My dream is to become a solicitor but I fear this may never happen. I'm basically really scared. I came here because I knew you would all understand.

Thanks for reading

Scott

Hi Scott and welcome to the forum!
I'm glad you've found us, because there are lots of people here who have qualified as doctors, lawyers and all sorts of other professions despite having keratoconus. Yes, life is more of a challenge with KC, but our philosophy is that it needn't stop us achieving what we want to achieve!
Keratoconus affects people in different ways, and it's hard to know how it will develop in any individual. Some get it mildly and find glasses will correct the vision. If glasses no longer work, then contact lenses are the next step and usually give much better vision. I don't know if the hospital has suggested these for you, but there's now a variety of different contact lenses that can be tried, so there's usually something that will work for everybody.
Lots of us can relate to the loss of confidence you describe - it's harder to relate to people when you can't see their faces properly and when you're missing out on the visual cues that other people take for granted.
It's good to hear that your uni is being supportive (have you found the leaflet on Supporting Students with KC on our home page, which you can give your tutors?) And brilliant that you did so well in your exams last year! I'm sure that with support you'll continue to do just as well this year.
We're not just a website. If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you a DVD of our 2007 conference, which covered all the different options available for KC these days, plus other information. And I'm sure other people will be along soon to tell you about how they manage with KC and that you're not alone!
All the best, and do keep that appointment in January and let us know how you get on.
Anne

Hey Scott

Welcome to the forum.

All the best in January; do stay in touch. Always remember that you are not alone; there is a whole community of people with keratoconus and we are here to support each other.

Andrew

Thanks to the support group and the vast range of lenses available for KC I live a perfectly normal life.

I have had two grafts and 20 years on even though I am functionally blind without glasses, the only thing I am unable to do is drive. It does take time to adapt to low vision but with slight changes these can bbe worked into every day life.

There are plenty of types of contact lenses including soft ones for our condition. The ones I have have revolutionised my life, I can do things I couldn't do with RGP lenses, so much so the Motorsport Association have informed me that it is just a formality getting my competition licence back (differnt to my road driving licence). I wear lenses all my waking hours just like someone who wears lenses for vanity reasons.

KC progression can stop as quick as it starts, mine has been stable for 5 years now,

Hi.
I'm a parent member (my daughter Charlotte has KC), we only found out on Nov 5th. (see my prev posts if necss). I can understand your low mood totally. As a mum I was absolutely devastated by the diagnosis at first but now I have come to realise that the future can still be as bright. Re your depression though which is my main reason for posting here this time: See your GP if you haven't already. Perhaps your depression has come about as a result of your hard work studying? Brilliant results by the way - well done! The diagnosis of KC, whilst obv important and relevant, maybe have been the proverbial "straw that broke the camel's back"? So go see somebody, talk to people (you say you are already, great), get your depression treated, read up on KC (on good trusted sites not the ones out there that will panic you unnecessarily like I did at first!!) You WILL find peace of mind I am sure. Take care. Angie

OK Scott,

Deep, DEEP breath here and lets discuss this. I am an optometrist, so do have a slightly different slant on things.

Although its really tempting to bury your head in the sand and ignore this condition, in reality, its never been a better time to get keratoconus. OK, I know you would like to shoot me for saying that, but actually, its true. There are currently a whole slew of treatments and management systems available that were un-thought of only a year or so ago in the UK.

Many people can get instantly improved vision with contact lenses of various types. You can either get these through hospital clinics, or, if you have the funds, you can go privately. Its YOUR choice. Is your Specsaver practice a specialist in keratoconus? If not, you may want to ask them if they know of any branches that are. You may want to look at the KC "friendly"optometrist list on this site http://www.keratoconus-group.org.uk/optoms/index.php.

There are more surgical options available privately than through the NHS. Why? Because the NHS has to evaluate treatments very carefully before they become mainstream. The private sector tends to be at the cutting edge of technology. You literally pay your money (or not) and make your choice. Surgically, there are options now that have been shown to halt the progress of keratoconus, such as corneal cross linking (CXL). These are not freely available on the NHS, because they are still under evaluation, but can be accessed at some hospitals which are conducting trials or they are available privately. CXL can be combined with INTACs, (plastic rings inserted in the cornea), LASER techniques (T-CAT) or phakic implants (Intra-ocular lenses) to improve vision.

In other words, there is a whole world of possibilities out there which you are not going to access by trying to pretend this hasn't happened to you. You may think I am being harsh. Well, perhaps I am - only because if you are fairly newly diagnosed, this condition is progressive for around ten years. So, if you want to do anything about it, you have to make some decisions in the near future.

I have many patients who are solicitors, bankers, IT specialists etc. It IS possible to carry on with your chosen profession with KC.... but only if you reach out and look for solutions.

I have extensive knowledge of what is available out there. If you want to talk, at any time, my contact details are in my signature.

Lynn

Welcome to the forums, I was dx with KC 8 days before my final exams last year at uni and literally felt like my world was crumbling aorund me (this forum managed to and continues to help me to pick myself up off the floor and carry on, the information and support on this board is incredible, everyone who posts here has been so kind and supportive)

Are you getting full access to a DSA (disabled students assesment) through university, as your entitled to one, which can offer many things from practicle things like laptops, software, a note taker, mobility assistance and more

Thinking of you and if you want to chat feel free to send me a PM

Lea
xox