Recently diagnosed.....what can I expect???

[Gaz2k21]

Greeting's Guy's what a find this is.....I recently got diagnosed a few months back with Keratoconus in both eyes and have been pretty unsure as to what I could expect, finding this forum is great and I've been lurking a bit to fish out as much info as I can.

If it's OK with you guy's I'd like to explain my situation and seek some advice...

So I got diagnosed when my high street optician (Vision Express) recognised the condition and referred me to my local hospital I was told I had Keratoconus in both eye's but my left eye was more severe and would most likely require a special contact lens in order to correct my sight..
At this stage I have had many consultation's and tried several different type's of contact, I most recently had one which is a hybrid (rigid with a soft skirt) that is quite comfortable but unfortunately does not correct my vision well enough,I have an appointment on the 1st of October to discuss this with my NHS Optician.
My right eye is fine with disposable soft lenses with astigmatism correction, I currently mostly use 2 pairs of glasses one that corrects the right eye and improves the left and another that has a blank lens in the left eye for use with my contact.
I also have a consultation at East Grinstead hospital on the 24th to see if I require CXL which I'm hoping will go ahead to prevent the condition getting any worse at the age of 31 I'm not sure how likely that is.
For the time being I mostly wear my glasses as I use computers alot both at work and at home I can't do this with the current lens I have been using as I cannot read the text on screens, in social situation's I generally will wear glasses or if i'm going to a gig/on a night out I will wear a soft lens in my right eye and nothing in my left (more recently I tried out an eye patch which was quite fun)

My experience so far is that correcting this condition is a slow process only made worse by how busy the NHS eye clinic is and how awkward my work shifts are but generally the service is very good and helpful.

I have a few questions if anyone can help mainly about the CXL...

If the CXL goes ahead how long am I likely to be out of work?
I'm a keen Muay Thai Kickboxer which can get rough occasionally will CXL mean that I would need to give this up or at least stop heavy sparring?
I'm pretty much reliant on the NHS for treatment as I cannot afford anything private at this stage is this likely to become problematic?

[James_Ldn]

Hi Gaz,

Sorry to hear you've been diagnosed with KC, but welcome to the club!

As you mention, getting CXL done is a priority. Keratoconus does usually stop progressing when you reach your mid-30s (but not always). As you're 31, I'd guess there's a reasonable chance of it progressing for a few more years at least.

It's possible to use the NHS alone if that's what you want to do. Personally, I found it too frustrating waiting many weeks to get contact lens appointments so tend to use private optometrists. But obviously that comes at a cost.

In terms of kickboxing, CXL certainly won't stop you from doing that. You might need to wait 2-3 weeks for your cornea to fully heal, but after that you should be fine. For both of my eyes, it took about 3 months before my vision was back to where it was before the CXL, but I think most people manage to return to work after a couple of weeks when most of the blurriness from the cross-linking will have gone.

Hope that helps,
James.

[GarethB]

In most cases once we find a lens that works, there are relatively few issues but as with any progressive conditions, we are all different so very hard to generalise.

Firstly regarding work, make sure your supervisor, HR and company occupational health (in some places this is also HR) are aware you have Keratoconus as they are legaly obliged to make reasonable adjustments. To generalise, for many this is making adjustmenst to work paterns so you can attend hospital appointments, access to facilities so you can put contact lenses in and out etc... As you work with computers, make sure you have a current Display Screen Equipment assessment (a legal requirement under the Display Screen Equipment Regulations) and this can help make sure that if necessary you have access to the right equipmen. For me this menat having a 22 inch monitor and make sure you take frequent short brakes rather than long braks after a couple of hours. If your employers have trouble making such an assessment or providing equipment, the Access to Work scheme can assist in funding additional equipment if it is deemed necessary.

In many cases, as we get older KC stabilises naturally as the cornea does stiffen with age (again there will always be exceptions), but to find out more about CXL, contact lenses, information that will be useful to your employer make sure you contact the KC Group and get on their mailing list. They will also send you all sorts of literature you will find useful.

How long off work after CXL, again down to your consultant to advise as each case is different. Only one eye at a time is usually done starting with the wort one, so you might not have much time off at all, depends how well you cope with one eye.

Kickboxing may have to go on hold after CXL as the cornea shape will be bouncing around for a couple of months or more but the consultant is the best to advise as they have all the information. It would be wrong of anyone to say one way or another that posts on this forum.

NHS on the whole is pretty good, a vast majority of peope I have come across in over 25 years having this condition and especially thein the past 10 years since joining the group find once a contact lens has been found that gives the vision they need, there are no real issues apaprt from the regular checks and periodic changes in lens prescription. I know many get hung up on must have 6/6 vision, perfect comfort with lenses and no halos, starbursts or other distortions. Bottom line is this is almost impossible to achieve so you need to be realistic. I use computers all day, have a passion for cars so 6/9 is the minimum I would accept because I am one line within the driving standard and a 10 hour minimum wear time. I can cope with other minor distortions so I can drive at night, but the must have is comfort due to the damage rigid lenses and the fact I have had a graft in each eye. Anything else is a bonus and for most of the past four years I get 6/5, excellent comfort with a 16 - 21 hour wear time and only minor distortions like halos and star bursts which are manageable. Prior to this I was managing close to my minimum standard but only an 8 hour maximum wear time, had to change my work significantly but staying with the same employer which has since lead to two promotions in the past 10 years.

It is important to be realistic about what level / quality of vision you really need to survive. A friend of mine in Birmingham is legally blind and has a guide dog yet he manages to succeed as a graphic designer running his own business. Admittedly he has a variety of visual aids to help, but with the right suport there should only be a few exceptions where we can't continue with our desired job. For instance you wouldn't have a blind person working as an analytical chemist even with additional visual aids as it would become a bit too dangerous and that is nothing to do with health and safety gone mad.

[CrippsCorner]

Hi and welcome. Where abouts are you from? NHS wouldn't provide funding for my area (Essex) so I had to stump up the cash to get CXL performed. I only needed a week off work whilst I was relying on my good eye, however I shall probably be getting that one done soon which will be harder to recover from. Have you had a CT scan yet? That's the most important thing, as over time it'll show how much your keratoconus is progressing.

My keratoconus is officially labelled as 'moderate' and I'm able to correct it to some degree with soft lenses... I chose to stick with these (and glasses sometimes) as I couldn't stand RGPs. Unfortunately I've had to recently taken the decision to give up driving at night but everyone's condition is different, hopefully you'll be alright there. One thing I would say is it moves quick, just over 18 months ago I had perfect vision and now I'm pretty seriously impaired. If there is progression I would push for CXL as soon as you can, if there's one thing I will regret for the rest of my life it's that I didn't do it sooner.

[Gaz2k21]

Thank's for the replies guys!

I work on computer's but am not "working" on them all day/night I work in police custody which results in quite a bit of time which is often spent reading books or using the internet I will most definitely discuss this with my boss though as yet with my glasses I am legally capable of driving which I also need for my job as I work in custody suites across East Sussex.

With kickboxing I should be able to speak with the club and arrange to stick to fitness/padwork/bagwork drills until my eyes are ready after the CXL (Provided it goes ahead).

With regards the NHS i'm one of those people that when I have a problem I put every effort into getting it resolved ASAP so Ideally I would seek out private aid unfortunately my financial situation doesnt allow for it at the moment it's a little frustrating but my only option.

Having this resource is great as it's a little daunting at first it's nice to see the experiences of those who have been living with the condition.

Im in East sussex by the way I generally have consultations in Eastbourne/Hastings and my CXL consultation is in East grinstead.

[CrippsCorner]

Some places used to offer CXL on interest free credit... I was considering this option myself, but unfortunately BMI told me they recently stopped that offer. Could be worth looking around though. As I've recently learnt, exposure time is crucial, so consider that when looking at private companies (we can do it in half the time! Isn't a good offer)

[Anne Klepacz]

As far as I know, East Grinstead is one of the hospitals that does offer CXL on the NHS. So anyone in their catchment area, or who can get funding from their own area to be treated there should be eligible if they satisfy the hospital's criteria for CXL.
Anne

[Gaz2k21]

Thanks for your replies guys, I went for my consultation at East Grinstead they we're busy and took about 3 hours before I was done with, they have decided to go ahead with CXL in both eyes as well as a precorneal ring in the left eye to hopefully help.

I have to say I'm pretty pleased with this so far even had a chat with the Eye Doc about the effect's and risk's it may have on me training in Martial Art's.

[CrippsCorner]

Sounds good buddy, good luck. Let us know how it goes... get lots of people asking questions on here but never following up what happens! So stick around if you can.

[Gaz2k21]

Will do, I havent posted much but I often browse the forums on my nightshifts when it's slow at work.