UK Keratoconus Self-Help and Support Association

Hi all,

I've just been diagnosed with keratoconus after 10 years of worsening eyesight. I'm looking for some information on what I can expect in terms of support and solutions now.

I started wearing glasses 10 years ago for computer work and reading. My sight gradually deteriorated until I became reliant on the glasses at all times, my right eye in particular is really poor. I don't really mind wearing glasses but was frustrated that my eyesight was making it difficult for me to enjoy some sports.

I had an eye test in January 2016 where there was another large jump in my prescription. I also noticed over the last year that I needed to resize fonts on my computer at work so I contacted Specsavers again in December. They referred me to the NHS with suspected keratoconus and the consultant has now confirmed the diagnosis and given me a voucher for complex lenses from Specsaver.

I'm booked in to Specsavers this weekend. What options are available to me? What improvements/differences will I see? I have tried contacts in the past but never felt particularly comfortable with them. I'm assuming this was probably because of the underlying condition as much as anything.

Thanks.

Hi Mowri and welcome,
The good news is that your keratoconus has obviously been very slow moving. And contact lenses designed for KC should make a big difference to how you see. There's a variety of different types these days - special soft lenses for KC such as Kerasoft, a variety of rigid gas permeable lenses, hybrid lenses and a variety of sceral lenses. So you should find something that will work for you. If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet about keratoconus which goes into more detail about all the various options available these days. And have you found the leaflets about KC and work that you can download from our home page? www.keratoconus-group.org.uk/sitev3/publications.html
The KC at work one may be useful to give to your employer.
Let us know how you get on.

Hi Anne,

Thanks for the welcome.

I'm just back from Specsavers. I will be trying hybrid lenses (RGP with a soft skirt?) initially. They've taken various measurements today and they'll hopefully have something for me to try by next week.

I'll drop you an email to get the literature.

Just wanted to post an update on my hybrid lenses.

I've now been wearing them for just over a week and feeling pretty positive about my progress. The first couple of days were very difficult, I just didn't feel comfortable and had real issues getting the lenses out to give myself a break.

I'm now getting 5 or 6 hours each day without any real difficulties. The lenses have started to irritate me a bit after that length of time but my routine recently actually means I don't need them for much longer than that. I'm hoping to try a couple of longer days over the weekend to see how it goes.

In terms of vision, I am delighted. Things are a lot clearer than I've experienced lately with my glasses. After my eyes calmed down a bit initially, I've been really pleased with the clarity.

Hi..you will get use to wearing lenses and they easy become part of your everyday life. Just remember to lubricate your eye with eye drops this will add to the comfort of your lenses (highly recommend preservative free). Getting them out is the hardest I remember rushing up my opticians panicking because i couldn't get mine out!! But he gave me some sound advice and I've never looked back! Good luck