KC people living in Scotland

Announcements from the Scottish local group

Moderator: Elizabeth Mair

papigoe
Posts: 0
Joined: Sat 09 Feb 2008 8:54 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: KC people living in Scotland

Postby papigoe » Sat 09 Feb 2008 9:45 pm

Hi all,

I'm Gordon, 40-something, living in Aberdeen. I have suffered from KC for more than 15 years and use rigid CL as treatment. Generally I'm happy with rigid CL (having worm them for more than 25 yrs) but sometimes get eye irritation. I'm new to this forum but would like to hear about people's experiences of grafts or Intacs. Cheers, Gordon

User avatar
james mckinlay
Chatterbox
Chatterbox
Posts: 211
Joined: Wed 01 Jun 2005 9:49 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: cumbernauld just outside glasgow
Contact:

Re: KC people living in Scotland

Postby james mckinlay » Sun 10 Feb 2008 2:39 pm

YES FOR ALL YOU PPLI HAVE NOT POSTED IN AGES HEALTH PROBLEMS DRIVING ME MAD AS USUAL BUT IM BACK NOW LOL

HELLO AND WELCOME GORDON GREAT TO HEAR FROM MORE NEW MEMBERS I HAVEHAD2 GRAFTS AND TO BE HONEST I CANT REALLY FIN AY FAULT FOR THEM THE DIFFERENCE THEY CAN GIVE TO YOUR SIGHT IS INCREDIBLE IT IS A SLOW PROCESS FOR HEALING BUT IF YOU FOLLOW THE AFTER CARE ADVICE GIVEN BY YOUR SPECIALIST THEN EVERYTHING SHOULD GO OKAY.

I MYSELF HAD A POBLEM WITH ONE OF MY GRAFTS 5 YEARS AFTERI HAD IT I DEVELOPED A BAD REJCTION EPISODE AND NOW I AM PARTIALLY SIGHTED BUT I MST STRESS THE CHANCES OF THIS HAPPENING ARE SO SLIM THT YOU WOULD WIN THE LOTTO JACLPOT LOL.

BUT IF YOU GET OFFERED A GRAFT I WOULD JUMP AT THE CHANCE TE PROCEDURE IS PAINLESS AND I NOTICED THE DIFFERENCE IN VISION AFTER A FEW DAYS.

BUT THERE ARE SO MANY PEOPLE HERE WHO CAN GIVE YOU THER OWN STORY AND OPINIONS.

HOPE YOU ENJOY THE FORUM AL THE BEST

JAMES

User avatar
Elizabeth Mair
Moderator
Moderator
Posts: 120
Joined: Sun 14 Mar 2004 4:56 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East Kilbride

Re: KC people living in Scotland

Postby Elizabeth Mair » Tue 12 Feb 2008 10:11 pm

Welcome Gordon,
By the way I came through Aberdeen station today. My parents live in Buckie so I was visiting for the weekend.

James,
iI is great to have you back posting - hope to see you at the next Scottish group meeting.

Gordon,
You are welcome tocome to meetings too. We meet in Glasgow. One of the group travels from Nairn for some of the meetings. If you would like to go on the mailing list - Scottish email list and national group mail list send me a PM with your details.

Hope that you will both keep in contact. Elizabeth(Scottish group leader)

papigoe
Posts: 0
Joined: Sat 09 Feb 2008 8:54 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: KC people living in Scotland

Postby papigoe » Sat 16 Feb 2008 2:15 pm

Hi Elizabeth & James,

Nice to hear from you and also to learn a bit about grafts. Hopefully I will post from time to time,

Cheers, Gordon

kirstyedmond
Posts: 0
Joined: Mon 21 Jul 2008 5:04 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: KC people living in Scotland

Postby kirstyedmond » Mon 21 Jul 2008 5:22 pm

Good afternoon everybody

I am really pleased to see this site (bit of a pun there?) and wish I had known about it twenty years ago.

I am a young middle-aged lady living in Banffshire, with grafts in both eyes which are now 18 and 22 years old - when I was diagnosed there wasn't any electricity, and they had to operate by candle-light ! I was only 11 when diagnosed, and had my first graft at 15. That being said, I have had fantastic sight from them (thank you Paul Hunter)...

... until now. Ho hum, all goods things must come to an end as they say.

It would be really good to hear from others who have had grafts which just sort of gave out on them? I am back to the excruciating itching, dryness, poor vision which I remember from the dim and distant past.

Thanks so much.

andrewmacintyre
Posts: 0
Joined: Fri 12 Sep 2008 1:49 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: KC people living in Scotland

Postby andrewmacintyre » Fri 12 Sep 2008 2:10 pm

Hello.

I live in Fife, am 33 and was diagnosed with KC at about 16. I have managed fine with RGP lenses for the last 17 years with only occasional discomfort from the lenses. Discomfort from the lenses has increased over time and I have recently had a soft lens added to my right eye with the RGP "piggybacking" on it which makes a big difference to comfort. It will hopefully keep things ticking along OK for another few years until no doubt the KC will decide that its time for a change of plan again!
Just found this forum and I can see there are a lot of people with the same condition and also that my case (for now) seems to be not as bad as many.

Andy

User avatar
Elizabeth Mair
Moderator
Moderator
Posts: 120
Joined: Sun 14 Mar 2004 4:56 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East Kilbride

Re: KC people living in Scotland

Postby Elizabeth Mair » Sat 13 Sep 2008 11:44 am

Welcome to the forum. I'll send you information about the Scottish KC group and add you to the mailing list.
Our next support group meeting is on 11th October in Glasgow at 2pm.It would be great if you could come along and meet other people with keratoconus.I'm not sure where you stay in Fife but there are direct buses from St Andrews and Dunfermline. We meet at the Strathclyde University chaplaincy centre which is close to Queen Street station and Buchanan street bus station.
Hope to see you at a meeting soon.

User avatar
Craig Duncan
Newbie
Newbie
Posts: 7
Joined: Tue 13 Feb 2007 1:12 pm
Location: Cumbernauld

Re: KC people living in Scotland

Postby Craig Duncan » Sat 14 Mar 2009 4:19 am

Hello all,

Well, what can I say? It's has been a hectic few months since I had my Intacts fitted back on Friday 12th December of last year at Gartnavel, under the stewardship of Dr Ramesh. From what I am lead to believe this was a trial and I am one of the first to get this operation done and very much the Guinea Pig for the rest of the Contact Lens Clinic Team who could not contain their excitement / Professional interest.

I was in and back out the same day and had been offered the procedure under a Local anaesthetic, but declined this kind offer and Voted for a General one instead and was despatched with 2 types of eye drops to keep me going. I did imagine it would be a whole lot more painful, but turned out to be more irritating / dry which came as a pleasant surprise. All in all since it was such a new procedure and My GP / Occupational Health Dept. had never heard of it before, they were only to willing to follow Gartnavels lead on being fit for returning to work and I was off work for 6 weeks.

The follow ups that I have had have been mixed reviews of the success of this operation. Yes, it's been a complete success in changing the shape of the Cornea, but my vision has got worse in the eye from(-10) to (-16), if that means anything to you reading this. The only other down side I am experiencing is the Halo's at night from lights sources and especially from on coming traffic which is taking a lot of getting used to as I am aware of my Pupil reacting to the light source.

Dr Ramesh is extremely happy with the position of the Intact Rings and is hoping that given another few weeks and trying a Contact Lens back in the eye should hopefully eliminate the Halo affect that I am experiencing. If not they may have to come out if I cannot get used to it and the end game will be a Corneal Transplant.

I am aware that there were two of us that had the Intact operation that day and part of the same Trial. As far as i am aware the other Guinea pig has had a lot more success with the improvement to his vision, so much so infact that his other eye is also showing signs of improvement.

If anybody any questions only to happy to help!

User avatar
Elizabeth Mair
Moderator
Moderator
Posts: 120
Joined: Sun 14 Mar 2004 4:56 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East Kilbride

Re: KC people living in Scotland

Postby Elizabeth Mair » Sat 14 Mar 2009 1:02 pm

Craig,
Welcome back to the forum.
Thanks for sharing your experiences. Did the other person have KC as well or did he have intacs for another reason? - maybe you didn't meet him.
Hopefully you can share your experiences at a Scottish KC group meeitng in the near future.

User avatar
Craig Duncan
Newbie
Newbie
Posts: 7
Joined: Tue 13 Feb 2007 1:12 pm
Location: Cumbernauld

Re: KC people living in Scotland

Postby Craig Duncan » Sat 14 Mar 2009 8:04 pm

Thanks Elizabeth

The other chap did have KC and from memory he had it in both eyes and bumped into him at our follow up appointment after the operation.

I will try and get along to the next meeting to meet the troops

Regards

Craig


Return to “Scottish Local Group”

Who is online

Users browsing this forum: No registered users and 6 guests