UK Keratoconus Self-Help and Support Association

Hi,

Haven't posted for a while now .... I've had a partial graft in my right eye and a keraring in the left, but am intolerant to lenses.

I've just been discharged by my lovely consultant, as there's nothing more that he can do surgically and although my grafted eye's useless, vision in the other's good enough for me to drive again, but I'll have to self regulate - driving at dusk/night's a big no, as I still get the halo effect with headlights, streetlights etc. Terrified, but excited, as I haven't driven since diagnosed with KC some 10 years or so ago in my early 30s. Anyone else in the same position - is it just driving in the dark that you avoid? Does the glare from snow or bright sunshine stop you too? Reduced visibility from fog and heavy rain?

Since diagnosis I've received the lower rate (mobility) DLA for an indefinite period .... Am I likely to lose that award now that I can drive, albeit in restricted conditions?

Once we've sorted insurance, I'll certainly need plenty of refresher lessons and won't have many opportunities to drive initially, as will have to share the car with my fiance who needs it for work, until we can afford a runaround for me. My 'disabled' bus pass expires shortly, and unlikely to be eligible to renew it, as I can now drive ......

I haven't worked (previously as a PA) since just before my graft 5 years ago, and since then, have been looking after my almost 4 year old son, and doing voluntary work too. Confidence is low work wise, so nervous about getting back into paid employment (bad experiences with employers just prior to graft), but want to do something, just unsure what, and if there's any support/advice available.

Apologies for the long post, but grateful for any advice/experiences . ( - :

Hi Teresa - good to hear from you again!
I've had a chequered driving history over the years including a couple of periods of 'self-regulaton'. A few years before my original grafts (back in the 80s) I gave up night driving for a year or so and then gave up driving altogether as my sight continued to deteriorate. Some years after the grafts, I went back to driving again after taking some refresher lessons to give me back my confidence in driving. For the next 10 years or so, I was reasonably happy driving both day and night wearing my lenses. Then night driving became difficult again. So I went back to driving in daylight only (and avoiding the other problematic lighting conditions you describe as well). That gave me another 5 years or so. I've finally stopped again (I had to have a regraft in one eye last year) and that will probably be it for me as I'm getting a bit long in the tooth! But I'm lucky to live in London with great transport links. You do need to make sure that DVLA and your insurers are aware of your KC. Presumably your consultant will be happy to write a letter confirming you're OK to drive. And from all you say, you're clearly very aware, as I was, that it's not just your own safety you need to think about but that of all the other road users and pedestrians whenever you're behind the wheel. And I know from your previous posts that you have the bonus of a hugely supportive partner! So all the best.
As far as DLA is concerned, you probably will end up losing it, if not immediately, then at the point when you're reassessed for PIP which is now replacing DLA and seems to have much more stringent conditions.
On the work front, it would be worth getting in touch with an employment adviser from Action for Blind People. They help with job retention for people who develop problems when they're in work and also give advice and support to those wanting to return to work www.actionforblindpeople.org.uk
Good luck with your new life! I know you've had a very rocky road with lots of setbacks so it's great you're now able to look to the future. Let us know how you get on.
Anne

Thank you so much for your lovely, and helpful reply, Anne.x