UK Keratoconus Self-Help and Support Association

Hi all!
Pleased to meet you all.
I m from Moscow - and as i know there is no such community in Russia such this forum. I m 24, have a wife - planning a baby. I have KC for 5 years, but do not wear lens. My job - international tranport communication (logistics). So. the problem is - i m scared about the future - will i be able to work full time with KC in 10-20 years - or will i be disable?

qwerty

Welcome to the forum; you are not the only person who posts here from the Russian Federation.

Your question is one that no one can answer, except to say that some of us have lived with keratoconus all of our adult lives and now in old age are still in full time employment.

Every good wish

Andrew

Interesting - is it possible to get blind at all for the rest of your life with KC? Or there are always excist options... I feel that my eyes getting worse after smoking, after having stress at work, and it is rather hard to drive in the evening. Also have a question about graft - is it possible to make graft before you get almost blind? And about the cost - how much does the graft cost in UK? In Moscow - Cross Linking 1000$ Graft - 1500-2500$.

Let me try to set my answer in a context: i was first offered a graft when I was coping very well with contact lenses (with my lenses in I had 20/20 vision). I decided not to go ahead at that time, but also decided that if I ever found myself with sight so poor that I could not drive, I would then accept the grafts on offer.

I wore lenses for another 12 years and then became contact lens intolerant. That meant that I was legally blind (blindness in the UK is defined as having visual acuity below 20/200.) I had my right eye grafted first and then my left.

In the UK most people have grafts at no cost at all.

some people are able to have CXL at no cost at all, although most people who post here and who have had CXL have paid for the treatment. I think that one of them may post about the costs involved.

Most people are able to have intacs surgery at no cost at all.

Contact lenses, regardless of type, dispensed through our NHS system cost £52.20, although this covers replacements due to a change of fit or prescription for a full year.

All the best

Andrew

Hi qwerty,

It is impossible to answer your question fully because we do not know how bad you KC is (though I should guess not THAT bad as you are not wearing contact lenses yet) and if you are progressing.

Some answers are: Contact lenses help most people with KC to live a normal life for ever. The condition stabilises with age and often is only active for 10 years.

Cross linking can halt the progression - studies show patients have been stable for 8 years or more after CXL

Grafting can really be done at any stage though my advice would always be do it when you HAVE to. Its a surgical procedure and surgery always carries risk. A graft can be very successful and last 20 or more years. There are cases when it less than successful and rejects. You will see posts about both situations on this forum.

"Going blind".. yes it is possible to lose a good deal of vision but its not very common. It is really important to make sure you are checked regularly in case there are changes.

So in general, KC will not carry on getting worse indefinitely and there are more treatments becoming available all the time. The majority of people live a normal and productive family life.

Lynn