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by John Smith
Mon 14 Sep 2020 10:39 am
Forum: General Discussion Forum
Topic: Being a parent of a Keratoconus sufferer
Replies: 4
Views: 3593

Re: Being a parent of a Keratoconus sufferer

Hi Cassandra, I just wanted to write a quick note to agree with everything Anne wrote, and to reassure you that Brooke is not alone. It sounds like you're in the right place now; and I share your frustrations that this was not identified sooner. As Anne said, most people with KC don't eventually nee...
by John Smith
Thu 14 Feb 2019 4:19 pm
Forum: General Discussion Forum
Topic: Re-graft pain
Replies: 22
Views: 14340

Re: Re-graft pain

I had a re-graft 4 weeks ago, and I agree that sneezing (and coughing to a lesser extent) caused pain. But that pain has reduced considerably and is barely noticeable now.

If your pain continues, I'd strongly suggest going back to your consultant, as things may need to be looked at.
by John Smith
Mon 17 Sep 2018 8:31 pm
Forum: General Discussion Forum
Topic: Occupational Health and KC
Replies: 3
Views: 4626

Re: Occupational Health and KC

I agree with RedOnion. I generally found the visits with OH when I was at my worst to be very helpful; the best thing they did for me was to note that the DDA (Disability Discrimination Act) applied to me. At that point, your legal protection against being "got rid of" improves, and your e...
by John Smith
Tue 08 May 2018 12:35 pm
Forum: General Discussion Forum
Topic: Vision with sclerals
Replies: 4
Views: 4300

Re: Vision with sclerals

Hi Malluc, and welcome to the forum! You might need a better fitting lens, but try taking the lens out, cleaning it if it looks to be full of gunk, refilling with saline and re-inserting. I find that over time (and only sometimes), my lens gradually loses the saline. Because scleral lenses are reall...
by John Smith
Thu 12 Apr 2018 11:57 am
Forum: General Discussion Forum
Topic: RNIB FILM -"IT COULD Damage the cause of our group"
Replies: 4
Views: 4745

Re: RNIB FILM -"IT COULD Damage the cause of our group"

I agree with the comments above - up to a point. I think the issue here is one which could smack of ageism. 1. The RNIB film is going to be aimed at a younger audience, I understand. 2. The younger audience with progressive KC are more likely to be able get CXL than those of us with a few years unde...
by John Smith
Wed 11 Apr 2018 5:11 pm
Forum: General Discussion Forum
Topic: Long term scleral use
Replies: 13
Views: 10987

Re: Long term scleral use

Really glad that you've progressed. Do keep us informed on how you get on with the replacement lenses when they arrive.
by John Smith
Mon 09 Apr 2018 4:27 pm
Forum: General Discussion Forum
Topic: Newsletters on forum for 2017 & 2018?
Replies: 4
Views: 5013

Re: Newsletters on forum for 2017 & 2018?

The newsletters have been "opt-out" for some time, but only 3 people opted out if I remember correctly. I agree with you though in principle but: * Many studies have shown that charities gain far more traction from a paper newsletter than from an email which probably won't get looked at. *...
by John Smith
Thu 05 Apr 2018 3:48 pm
Forum: General Discussion Forum
Topic: Newsletters on forum for 2017 & 2018?
Replies: 4
Views: 5013

Re: Newsletters on forum for 2017 & 2018?

Hi. I can confirm that the recent newsletters are now online on the new website, which will be launching to everyone soon. We're not spending the time at the moment having to keep two sites up-to-date. In the meantime, if you send us your postal address, we can add you to the mailing list so you'll ...
by John Smith
Mon 12 Mar 2018 11:17 pm
Forum: General Discussion Forum
Topic: Long term scleral use
Replies: 13
Views: 10987

Re: Long term scleral use

I've been wearing sclerals on-and-off for about 15 years now. Currently I wear one in my right eye for about 14 hours a day, but the left one only for about 8 hours. That is gradually improving though. I've had the left lens for about 2 months.I insert the right lens correctly first time almost all ...
by John Smith
Mon 12 Mar 2018 11:04 pm
Forum: General Discussion Forum
Topic: Advice Please - Commuting to/from work
Replies: 8
Views: 6560

Re: Advice Please - Commuting to/from work

Hi Heather, One option which may be worth considering is "Access to Work". I understand that under some circumstances, they may provide a companion to assist you on your commute. I agree with the suggestions above though - talk to your HR and occupational health, get them to confirm that y...

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