Quicktopic posts: Aug 2003

[umbilica@umbilical.demon.]

Deleted by topic administrator 14-08-2003 12:53 AM

[moran]

hi im 19 and i have KC
recently i i have felt like there is impulse im my eyes and the picture have beeing moving i wanted to know if anyone know what it is

[eamonngillespie GILLESPIE]

Hi Rosemary,
thanks for your message.
When i say getting up early hurts my eyes, i should have gave an explanation to put into context what i was trying to say.. When i went across to my interview to Hope at the beginning of feburary i had to get up real early around 5.00 am. Thank god my dad took me up to the airport. But at the airport i felt so helpless ( i could not see the signs with my glasses, and when i put my lenses in at the airport i thought my eyes were going to explode, you know extremly watery, blood shot, sore). I was going to nearly take them out but that would mean missing my flight as i could not see to get on the correct plane. I know what you are saying when you say that this thing will come with every job - you are absolutely right. but i don't want KC to beat me into the ground thus becoming a victim to this thing. i want to lead as normal life as possible. With KC what does 'normal' entail. am i feeling sorry for myself

eamonn


>From: QT - umbilica@umbilical.demon.co.uk (Rosemary F. Johnson)
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic 6-A46Jzt4sJAXLTWnJNHsx
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: 5 Aug 2003 12:39:06 -0000
>

_________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE*
http://join.msn.com/?page=features/junkmail
< replied-to message removed by QT >

[Kev]

Hi Eamonn

I can sympathise with your early morning problem, i find that despite how early i go to bed, if i get up early my eyes are always sore when i put my lens's in, i find getting up an hour before i wil put them in helps, but thats just me.

Regarding leading a normal life with KC, im not sure thats possibe, i am in a catch 22 situation at present, i have had 2 ops and doc is having problems fitting lens on left eye( glasses are no use) so i wear a right lens all the time. I get up usually at 7 and put lens in at 8 to go to work, because i can not see a thing without it i will keep it in until i go to bed, i get lots of iritation but can cope with it, My GP goes mad saying i should take it out when i come home from work and rest eye all evening because im encouraging infection, but without it im stuck so have no choice.

So to me this is normal life as i have never known any different as i was diagnosed with KC when i was 11.

kev

[racing@umbilical.demon.co]

Oh dear....... getting u pat the crack of dawn to catch early
flights..... yuk!!! I remember that all too well... plus
getting off overnight flights (to/from Jo'burg) feeling all
groggy - and even worse the next morning.

A suggestion, Eamonn - next time you fly, get the airline to
book you in as "disabled" and order special assistance. You do
this when you book the ticket. SOme of them are better than
others, and some can if anything be overattentive. Make sure
they give you the support you need. And don't feel embarrassed
- plane tickets are expensive enough, aren't they??!

Good luck witht he course and the placements.

Rosemary

--
Rosemary F. Johnson

[Dave]

My 22 year old son, disappeared off to Australia for 16 months. He returned only some 4 weeks ago and indicated that he had a problem with his left eye, which had started prior to his leaving for Oz. Next morning, I took him down to my optician ...... he had never seen the condition but did provide a letter of referal to our local hospital. The doctor in the eye clinic diagnosed KC and refered him to the contact lens clinic where he was told that contact lenses would not work but spectacles could correct his vision to 6/18. My concern is that because KC is such a rare condition, he may be offered treatment which excludes many possibilities e.g. scleral lenses etc, because of a shortage of specialist knowledge. I need help in locating, in Scotland, a specialist in the KC field to ensure that my son can explore all possible alternatives.

Dave

[Andrew Thomas MacLean]

Dave

Where in Scotland are you? I'm in the Glasgow area and have always found the service I receive at Gartnavel Howpital to be excellent. Prior to moving here I was in Aberdeen where my condition was diagnosed. When in Aberdeen the Opthalmologist referred me to a private sector optician where, under an agreement with the hospital, they treated me as a national health patient.

I'd probably reccomend that your son goes to see his GP and ask for a referral to an Opthalmologist. Your GP will know which hospital local to you will give the best cornea service.

All the best.

Andrew
----------
>From: QT - Dave <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Sun, Aug 10, 2003, 9:42 pm
>

< replied-to message removed by QT >

[Elizabeth]

To Dave and Andrew in Scotland.
Good to find other Scottish people with KC.I live just outside Glasgow and attend Gartnavel for lenses. I also know 2 good opticians who were my opticians at the hospital
who have private practices if you need one.
Are you interested in being part of a Scottish KC support group? I hope to set up the group soon.There will be info in the next newsletter, but email me before then.
Any others interested in a support group get in touch too.
emair@supanet.com

[mark]

hi i have just been to my optician he thinks i have KC but reffered me to the hospital just to check is it normal to have to wait 8 months to see a specialist i am worried about how bad it is going to get as my wife is expecting our first child in 6 weeks everything in one eye is now blurred and i think the other one is going the same way and am starting to panic i live in fife in scotland
thanks mark

[eamonn gillespie]

Hi Jannet Manning & Anne
thanks for responding to my request for a support pack to give to my course director.
Jannet i have left a message on your voice mail. It would be great to chat to you before i begin the course - if not
sure i will be in your neck of the woods come sept.
Thanks a million for both yourself and Annes's help. I really appreciate it

Eamonn