The lives people lead..

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

cameronpcollier
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Joined: Tue 17 Sep 2019 8:33 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

The lives people lead..

Postby cameronpcollier » Wed 18 Jan 2023 7:32 pm

Hi All,

First post of mine on this page..

I’m 24 years old and was diagnosed with KC at 16. Ive had CXL on my right eye (the worse one by far) and my left eye has luckily remained stable (no CXL yet) doing the leg work for the vision I have.

For a long time, I’ve had a pair of glasses with a balance in the right lens to give me somewhat mediocre sight. I’m currently in the process of trialling a kerasoft in the right eye and toric lens in the left. The NHS would only offer me RGP for my right eye (which didn’t agree with me) but luckily a brilliant private optometrist is working with me to find another solution, hopefully giving me 20/20 in my left eye and 3/4 lines down with the right.

So my reason for the post..

I’ve been battling with self-esteem and confidence issues over my keratoconus for a few years now. Paired with the anxiety of how bad this condition could progress in the future, I have all of the worst case scenarios bouncing around my head on a weekly basis.

I used to play Rugby for years which I’ve since stopped due to poor vision.. I now have a successful career but don’t know anyone else with my condition..

What lives do you lead? What careers/hobby’s do you have? Has KC stopped you from doing anything and do you know of any exciting prospects in the future for our rare condition?

My 11 month old baby is my biggest motivator in life. I suppose I’m just after some reassurance that a normal life with all the holidays, fun, and memories can still be there for me in the short and long-term future.

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Anne Klepacz
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Posts: 2271
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: The lives people lead..

Postby Anne Klepacz » Thu 19 Jan 2023 4:29 pm

Welcome to the forum, Cameron. We've e-mailed when you were having difficulty registering, so I've already told you my story. But I hope other forum users will reassure you that, now most people diagnosed with KC have the option of CXL, the prospects really are very much brighter for this condition than they were even 10 years ago. And just to remind you that we have a Zoom meeting on Saturday plus face to face meetings in March in Birmingham and London, all listed on the Events ticker on our home page.
And have a look at some of the stories members have told at our conferences - this one, from John who organises the West Mids meetings and was diagnosed way before CXL was invented, is pretty inspirational!
https://www.youtube.com/watch?v=3i1VPUwAkZs&t=1s

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space_cadet
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Posts: 956
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
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Re: The lives people lead..

Postby space_cadet » Thu 26 Jan 2023 8:42 am

I am legally blind with incredibly poor fluctating tempramental vision, I use a long cane when out n about. I also have a 2 n a 10 yr old. I refuse to allow KC to stop me from doing things I just have to find other ways to do them.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Lia Williams
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Location: Surrey

Re: The lives people lead..

Postby Lia Williams » Mon 30 Jan 2023 6:04 pm

Hi Cameron.

Most of the time I can forget I have KC as with my contact lenses as I have very good vision with them, although I do now need reading glasses (due to my age!) for small print and intricate sewing.

Sometimes a contact lens re-fitting has taken several appointments which can be very frustrating but that's not unusual for someone with keratoconus. I've worn contact lenses for over forty years, intially for myopia and vanity but for the last 30 years for keratoconus. I currently wear RGPs which I piggy back with daily disposables. Over the years there have been many developments in contact lenses, not just new designs such as kerasoft and mini sclerals but also to the materials used to manufacture lenses. So I feel confident that there'll be a suitable design of contact lenses for me for the next 20 or 30 years.

When I first found out I had keratoconus I had never heard of it and there was little information available to get an understanding of how my eyes might be affected. I was just happy that I had found an optician who was able to fit my eyes so I could get on with life. In this country keratoconus has an incidence rate of one in 450, so it is quite likely that you know someone who is also has it. It's just that you don't know they do! I recently discovered that an old school friend also has keratoconus and oddly enough over the years I have had four colleagues who have also have keratoconus.

Although contact lens fitting can sometimes be frustrating once someone has their lenses they just get on with their lives, which is why you might know someone with keratoconus but not know they have it.

For most people wearing "ordinary" contact lenses wear time of 10 -12 hours a day is typically suggested. This is not really an option for us so we all need to learn how to manage contact lens wear so we have our sight when we need it. If your vision without glasses is poor then it's worth keeping a pair glasses as back up, even if you only wear them around the house and seeing to the children during the night. If you are going to have a late night perhaps give your eyes a break earlier in the day, or put them in later the following day. Always carry a spare pair (an old pair is usually fine for this). These days contact lenses are extremely unlikely to fall out, but if you do have to remove one in a strange place this is when loss is more likely. Always put the plug in when you are cleaning your lenses over the sink.

The only thing that KC has stopped me doing was teaching my children to swim as without lenses my vision is poor. Swimming in contact lenses is a no-no. Some people do wear tight fitting goggles over their contact lenses but I wasn't risking this as my children could have grabbed my goggles causing my lenses to ping out, I wasn't going to risk losing a lens that had taken so long to fit. If I had my time again I would get my glasses prescription made into goggles which would have given me enough vision.

Hopefully the trial of your new lenses has gone well and you too can put lens fitting behind you for the next year or so (don't forget to go to your check-ups).

Lia

cameronpcollier
Newbie
Newbie
Posts: 4
Joined: Tue 17 Sep 2019 8:33 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: The lives people lead..

Postby cameronpcollier » Mon 30 Jan 2023 8:14 pm

Thanks for the replies all..

It’s nice to be reassured that many people in the group manage to continue with life and put up with KC.

I’ll persevere until I hopefully get used to managing my condition.

But thanks a million, your replies have really put my mind at ease that KC won’t put a stop to my life if I don’t let it!

Gaz2k21
Contributor
Contributor
Posts: 20
Joined: Wed 10 Sep 2014 2:50 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: The lives people lead..

Postby Gaz2k21 » Mon 27 Feb 2023 4:12 pm

I'm quite lucky as my KC is not to ad although since losing half of my IC Ring my vision in my left eye is awful however I still regularly train kickboxing and jiu jitsu, I train and perform as a professional wrestler and I work as a prison officer where I am actively involved in Use of Force under various roles, I generally have alot of physicality in my life (also im just shy of 40 years old) I don't let KC ruin my life I have to make adjustments to how I do things but there's nothing really that I have wanted to do that KC has stop.

My advice would be to get CXL and experiment with what works for you, I've had CXL and have half in IC Ring in my left eye (The other half was removed after it protruded this is quite uncommon) I've met quite a few people with the condition that lead a good life (including a fellow pro wrestler) I'm just in the process of tests to get an implantable contact lens which from what I gather is not common as a treatment for KC but seems to be the most suitable for me considering how sensitive my eyes are (I struggle with soft lenses let alone RGP) it was even noted during surgery that my eyes are super sensitive.


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