Newly diagnosed and have PCV licence

[Ashy]

I have recently been diagnosed with having KC. The consultant at the hosp was pretty vague and said he wouldn't need to see me again and that my optician would manage my condition. She won't even look at me and said that I should see a contact lens specialist at the hosp! I have made an app with an optician on the list on here in the meantime - but isn't until 20th Nov!

I just wondered what the possible outlook is? I'm 29 and my vision has been great up to now. I also hold a PCV licence and the consultant said that although it may not get any worse my sight may deteriorate to the point where I loose my PCV licence. Although coach driving isn't my main job its one that I really really love and do for the pleasure rather than the money!

Thanks for listening to me waffle!

Ashy

[Andrew MacLean]

Ashy

The temptation here is to blow smoke. It is true that, as time passes the cornea tends to stiffen naturally. That means that the older you ate when KC is first diagnosed the less likely you are to need extraordinary measures to control the condition. That said: nobody knows what lies ahead!

Enjoy what you do while you can do it. The time may not come when you have to stop.

Welcome to the forum.

Andrew

[Lynn White]

Ashy,

Its sounds as if the condition is not too bad at the moment, as the consultant referred you back to the optician. I know its frustrating she won't apparently sort you out.. but many High Street optoms know little of KC as it is mainly handled in the hospitals.

What the consultant meant was that your vision in glasses could get too bad for you too pass the eyesight test. However, with keratoconus, most people can wear contact lenses that restore normal vision (they smooth out the irregularities on the front of the eye caused by the keratoconus ) and as long as you can pass the test wearing the contacts, that's fine.

Prospects: its difficult to say with this condition. You may not actually get any worse, you may get slightly worse and then the condition halts or it could progress and get worse quite quickly. In general, the older you are at onset, the milder it tends to be. As many people start with KC in their teens, being 29 at diagnosis is a good sign.


Let me know if you want more info!


Lynn

[Lizb]

You need to disclose this to the DVLA, I was also a PCV holder when i was first diagnosed. I got sent a form from the DVLA once it was disclosed that my optician needed to complete as to what my vision was - unfortunately i lost my PCV licence but kept my car licence and have since gained my motorbike licence.

The difference with the PCV licence is the requirement to have a minimum uncorrected vision in each eye independantly. There are some grandfather rules to this as an exception - however as you are younger than me (and i got my PCV licence shortly after my 18 birthday) i suspect you wont be elligible for the grandfather rules.

I dont know who you drive for, but if they have a company doctor talk to him in the first instance, if they dont then talk to the DVLA and disclose the condition - i think i just phoned them up and they sent me the form to be completed and sent back.

[Ashy]

Many thanks for your replies.

I've filled the DVLA forms in this week, the Company I drive for doesn't have a company doctor but I've informed my manager of my situation.

Guess I'll just wait and see what the Optician says on 25th Nov and take it from there, hoping the KC stays mild as my plans have always been to go driving abroad in 15 years when the mortgage is paid!

Ashy

[Ashy]

Aaargh

So frustrated - saw KC Optician in Nov, he wanted to monitor how much I progressed in six months so was due to go back to him in May, however I feel that my KC may have got worse in the last couple of months as the ghosting of signs and writing has got worse so rang to see if I could see him earlier - he retired at Christmas!

Have asked for another referral to hospital as I feel that they should be helping me more rather than me trying to help myself!

In the meantime I've seen a new optician from the list on here who says my vision is great but the KC is obv causing the ghosting and frustrating me! Too right! He said that he could potentially make contact lenses to correct this but they would be the mildest ones he's ever fitted!

Any advice??

Ashy

[Andrew MacLean]

Ashy

going back to hospital is the right thing to do; if they are not co-operative ask for a referral to a more specialist unit.

All the best

Andrew