My thoughts about Keratoconus

As I wrote in the ‘about’ page, Keratoconus is not life-threatening. That being said, it is not an easy condition to live with.

I think the hardest thing is how much KC impacts on day – to – day enjoyment of activities which should be simple to enjoy. Taking a walk in a park, for example, results in a brainstorm of ghosted images of grass, flowers and trees all mixed in a watercolour of white and blue sky in a giant blur. Going to the shops has a similar effect, and if you don’t have the strength on a particular day such distresses can really get to you.

I’m a person who enjoys a lot of visual hobbies; writing, for one, and trips to the cinema another. All are impacted on by Keratoconus; there doesn’t feel like at of escape from a condition that affects everything you look at, especially when the things you used to enjoy doing become the hardest to do.

I remain hopeful that there is a solution for me that will work, and that my own quality of life will improve when I find it. For anyone with KC, I will say please do not ever give up hope- it is not easy, but there are solutions out there. Medical science has improved a lot in this field recently, and there are now more ways than ever to improve quality of vision for sufferers of KC- it’s just a matter of trial and error.

I personally have a brilliant family and friends, and a brilliant wife who is of tremendous support. So too do I owe the NHS my thanks for what they have done so far. There have been and still are frustrations with waiting for movement on appointments, on what feels like a tremendous struggle uphill waiting and waiting for the next step, but that is not the fault of those staff who work tremendously hard to try and better the lives of others, and so for them I have a lot of respect.

I would say anyone in the UK who uses the NHS and has been diagnosed, immediately push for Corneal cross-linking. If they can stop the progression early, then all the better for you in the future. And don’t feel afraid to be a pain – call, write letters, copy in the care trusts if need be- it’s important that you are seen to as quickly as possible. I am certain I would still be a way down the line had I not been a bit vocal. Make them hear you. You’re a person, not just a number.

 

 

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9 thoughts on “My thoughts about Keratoconus

  1. Hi Alex,

    Thank you for sharing your story about your experiences with Kerataconus. I was recently diagnosed with Kerataconus and I’m finding it difficult to deal with it, especially as I’m deaf who relies on lip reading majority of the time. And kerataconus certainly hasn’t helped. But I guess, it could’ve been a lot worse. It was nice to read an article about kerataconus from a personal perspective so thank you. I hope it gets better for all of us who are suffering from this disease.

    Take care,

    Syeda.

    • Hi Syeda

      Thank you for your kind comments about my blog. I haven’t updated this for a while I must admit, but I am glad you have found it useful.

      I can certainly appreciate your difficulties with this condition, and can only hope that this doesn’t impact you too severely to lip read.

      You have my very best wishes.

      Alex

  2. I am so happy I found your blog, and I thank you for writing it. I noticed the Keratoconus early in my teen years but after multiple eye exams they couldn’t quite figure it out, Now at 22 I notice how rapidly it’s progressing. While I am scheduled for 3cr surgery in a few days I still find myself on the fence .. Here in the states it’s not FDA approved so everything is out of pocket /: I’m wondering whether I should try contacts? Or go for it, and put myself in quite a debt. Any advice?

    • Hi thanks for the kind words on the site. Regarding the 3CR, I personally wish I had the chance to get it done sooner. I was never told it was an option until things had progressed and if I had the treatment earlier then I believe it could have helped slow the progression.

    • My 13 year old son just had the cross linking procedure today. He has been sleeping most of the day, which is best. Hoping we did the right thing for him. We live in the states so it is not FDA approved so we were concerned. I read your blog before today and it did help me prepare him for the eye clasps. They were probably the hardest parts of the whole procedure. Just wanted to thank you. It’s been an emotional day.

      • Hi Erin, thank you for your message. I hope your son will be fine. I would say you have done the right thing, I only wish I had it done sooner to help slow the pace of the condition. My very best wishes for you and your family and I am glad this blog has helped. Take care.

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