Advice/discussion etv

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Badeyes81
Newbie
Newbie
Posts: 2
Joined: Fri 31 May 2019 8:24 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Advice/discussion etv

Postby Badeyes81 » Fri 31 May 2019 8:43 pm

Hello,
I have a few points and advice I’d like to ask. I have been diagnosed with KC in both eyes. Right eye is the bad one currently left is doing all the work. I first noticed issues end of November last year. Finally went to see medical centre a couple of weeks later as I put it down to tiredness due to increased work load and schedule changes. I was then seen in Birmingham early jan where my diagnosis was given. I am somewhat of a rare case as I am 38 and had no Vision issues until nov 18 albeit a squint and operation when I was a baby.
I am in the Army and my job is on the line as obviously to shoot you need a good right eye and I no longer have that my vision is about 20% of what it was. I’ve been back to Birmingham a few times where I have seen Debbie the contact lens specialist and she has been great and patient with me as I have always had phobias with eyes and things going near them. I have been given a trial lens to try with that is minuscule but has improved the vision to I would say 85% of where it was. I will be going back again for a bigger and adjusted lens that will hopefully improve and be more comfortable. I am with dr Koli in a few weeks to be considered for CXL -without it and lens getting me back to 6/6 I will likely be discharged from the army after 16 years exemplary service which is worrying as I need a job to pay the bills and am close to pensionable age. My left eyes vision is fine right now but the specialist did say they were surprised this was the case as there is astigmatism present in that eye. Just about held onto my driving licence but obviously this will change should the left eye go.
I guess my questions are:
Do you think they will do CXL? I’ve been told over 35 they usually don’t but as mines come on so quickly will this aid my case?
I have heard that at my age there is a rare form of KC that can occur in later life - I’ve had no issues shooting at 300m and always passed my annual marksmanship tests and been a good shot so it’s all a bit of a blur how I’ve got to where iam. My vision is almost like someone has scored lines across my eyes and its all blurred and not as bright if that makes sense? Only plus point is looking at street lights is strangely beautiful in the way it looks.
Sorry for the long post as I guess I just want to discuss and air with people who understand what it’s like as most people don’t understand and maybe they think it’s not as bad as it is. You don’t appreciate what you have until it’s gone I guess.
Thanks
Stu

User avatar
Lia Williams
Moderator
Moderator
Posts: 481
Joined: Thu 16 Feb 2006 5:27 pm
Location: Surrey

Re: Advice/discussion etv

Postby Lia Williams » Sun 02 Jun 2019 6:52 pm

Hi Stu,

Welcome to the forum.

It is unusual to discover that one has keratoconus in one's late 30's but it's not unheard of.

Badeyes81 wrote:Hello,
Do you think they will do CXL? I’ve been told over 35 they usually don’t but as mines come on so quickly will this aid my case?


The decision to offer someone CXL is usually based on the fact that keratoconus has been showed to get worse over the previous six months and that cornea is still more than a certain thickness. Don't forget that as with any procedure there is always a slight, albeit small, risk and some people do suffer from a haze in their vision for a few months.

Badeyes81 wrote: I have been given a trial lens to try with that is minuscule but has improved the vision to I would say 85% of where it was. I will be going back again for a bigger and adjusted lens that will hopefully improve and be more comfortable.


It's not unusual to have several lens fittings before optimum comfort and vision is achieved.

Do look at the main part of the website where you will find lots of information and links recent conference videos:

https://www.keratoconus-group.org.uk/

Also the West Midlands Group often have meeting and you might find it useful to attend and talk to other people with KC. Details of the meetings can be found here:

viewtopic.php?f=7&t=16634

Lia

Badeyes81
Newbie
Newbie
Posts: 2
Joined: Fri 31 May 2019 8:24 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Advice/discussion etv

Postby Badeyes81 » Mon 03 Jun 2019 3:33 pm

Thanks for welcome. Lens specialist did say my corneas are soft and haven’t hardened which by my age should have happened. I hope they do CXL as without it my job and career will be taken away from me.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 48 guests