UK Keratoconus Self-Help and Support Association

I have KC in both eyes, was diagnosed 7 years ago in my teens and at the time was discharged from hospital care to seek treatment from an opticians was very minor at time, couldn't tolerate RGPs so managed with glasses until now.....

Have now been told that prescription for glasses will no longer correct to driving standard so opted to try Kerasoft lenses through opticians whilst simultaneously being referred back to the hospital.

6 weeks on hospital have just seen me and said to come back in 2-3 months to discuss treatment options, explained that need car for job etc (condition of employment) and appealed to the Dr on how to speed up the process. Was asked if i had private healthcare (i dont) so was then informed that i could appeal to the consultant via a letter.

Waiting on final contact lens fitting next week with opticians but have been told this will not correct right eye and at best bring left eye back to border line driving standard (optician unsure whether this will definatly work)

Also have the option to pay some considerable £££ and go under my partners healthcare which covers pre-existing conditions but will only cover corneal graft (won't cover CXL)
Am now perplexed by the differing options whilst pressing concern is to get back driving. So now hoping the lenses sort my left eye in the interim but as right eye no chance contemplating going private for the graft in the useless right - or is there an option I haven't considered?

danwilli

Welcome to the forum!

You seem to be having a really torrid time just now, and I am sure that we all have the deepest sympathy with your situation.

I am having trouble understanding why the hospital discharged you in the first place, but I wonder whether your optician has given thought to any of the other lens types or materials that ate available and commonly used for people with keratoconus? I never have really managed with soft lenses, but the best lens I ever wore was my haptic (scleral lens). Others on the forum have had very good results with kerasoft, hybrids, piggy-back, any of the large number of rgp corneal lenses etc.

The point here is that KC is different in each of us. Sadly, there is no one-size-fits-all solution.

As to CXL, there are some places in the NHS that seem to offer this therapy, while others do not. There are also other surgical options, short of transplant. Again, I am surprised that your hospital clinic did not discuss all these with you, perhaps this was what they intended when they invited you back for a meeting with the consultant. Reading your post it seems that your initial hospital appointment was covered by a junior member of the ophthalmology team.

As to CXL, one word of caution; it may not, on its own, appreciably improve your vision.

Andrew

On the work front, have you found the 2 leaflets on KC and work that you can download from the homepage of this site? www.keratoconus-group.org.uk/sitev3/publications.html
And if you'd like our information booklet about KC and more info about options, do e-mail your postal address to anne@keratoconus-group.org.uk
Anne