I am 33 and was diagnosed with Keratoconus about 8 years ago, for which I have worn RGP's, since that time. I have just recently discovered this website, (a bit slow in en-lightening myself to the wonders of the internet !).., and noticed the West Midlands Forum without postings, so thought would sort of put it on the map !.
I have a really supportive optician, but until this point had never communicated with anyone who even knew about KC.., so find comfort in just logging on to this, every now and again, when I'm having 'one of those days' when the lenses won't behave and the world is a blur !.
Thanks.
Hello from The Midlands !
Moderators: Anne Klepacz, John Smith, Sweet
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Sarah Beales
- Newbie
- Posts: 5
- Joined: Mon 17 Jan 2005 9:07 pm
- Location: worcester
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Sarah,
Welcome to the forum.
Where abouts in the Midlands?
I am in Warwickshire and visit the Coventry and Warwick Hospital in Coventry. I must admit, I am not aware of anyone else in the Midlands, but for my sins, I have the contact number for the Midlands co-ordinator whom I must call at some point.
Regards
Gareth
Welcome to the forum.
Where abouts in the Midlands?
I am in Warwickshire and visit the Coventry and Warwick Hospital in Coventry. I must admit, I am not aware of anyone else in the Midlands, but for my sins, I have the contact number for the Midlands co-ordinator whom I must call at some point.
Regards
Gareth
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Sarah Beales
- Newbie
- Posts: 5
- Joined: Mon 17 Jan 2005 9:07 pm
- Location: worcester
Members in the Midlands
Hi Gareth,
Thanks for your reply.
I am in Worcestershire, so got to Worcestershire Royal Hospital, famous for driving around the outside in circles for hours, because you'll never find a parking space,(even with lenses in !).
Regards,
Sarah.
Thanks for your reply.
I am in Worcestershire, so got to Worcestershire Royal Hospital, famous for driving around the outside in circles for hours, because you'll never find a parking space,(even with lenses in !).
Regards,
Sarah.
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Joanne Poultney
- Contributor
- Posts: 29
- Joined: Thu 03 Feb 2005 9:47 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Leicestershire
Hello
I too live in the Midlands (Hinckley in Leicestershire) and go to the Cov and Warwick hospital.
I was diagnosed with KC about 14 years ago. I've had a graft on my left eye in 1998 (very successful - vision much improved with glasses). My right eye is now a real pain. Vision not much good and contact lens really uncomfortable. Told the optician how fed up I am and he's referring me to the consultant again. Currently waiting for an appointment.
Not overjoyed about the prospect of another op but if the result is as good as my left eye then it'll be worth it.
Only problem is that when I had my last op I was single but now I'm married with a lively toddler to look after. Very worried about how I'll cope looking after the little one when my husband is at work. I remember being told not to lift anything heavy!
Would be interested to hear from anyone who's had an op whilst looking after a family. All my family live in North East so won't have very much day to day support available. Would Social Services help at all?
Oh well it's just a case of wait and see what the consultant says.
I too live in the Midlands (Hinckley in Leicestershire) and go to the Cov and Warwick hospital.
I was diagnosed with KC about 14 years ago. I've had a graft on my left eye in 1998 (very successful - vision much improved with glasses). My right eye is now a real pain. Vision not much good and contact lens really uncomfortable. Told the optician how fed up I am and he's referring me to the consultant again. Currently waiting for an appointment.
Not overjoyed about the prospect of another op but if the result is as good as my left eye then it'll be worth it.
Only problem is that when I had my last op I was single but now I'm married with a lively toddler to look after. Very worried about how I'll cope looking after the little one when my husband is at work. I remember being told not to lift anything heavy!
Would be interested to hear from anyone who's had an op whilst looking after a family. All my family live in North East so won't have very much day to day support available. Would Social Services help at all?
Oh well it's just a case of wait and see what the consultant says.
Another Midlander!
Just a quick hello from to my fellow Midlands KCers!
I live in Leamington Spa but still attend Radcliffe Eye Infirmary in Oxford as lived there previously, although grew up in Warwickshire.
Have been to Cov and Warks eye casualty and they were great!
Hope you find the group as useful as me
Caroline
I live in Leamington Spa but still attend Radcliffe Eye Infirmary in Oxford as lived there previously, although grew up in Warwickshire.
Have been to Cov and Warks eye casualty and they were great!
Hope you find the group as useful as me
Caroline
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Sarah Beales
- Newbie
- Posts: 5
- Joined: Mon 17 Jan 2005 9:07 pm
- Location: worcester
Replying to the Midlands.
Received correspondance from the West Mids Support Group (re; meeting on 12th March), Thank You.
Sorry to hear situation troubling you Joanne. I don't have children.., and often wonder how KC patients cope. I don't know what Social Services could do.., but would imagine it would be a good starting point. I have a friend who is a Social worker and could certainly make some informal enquiries with her if that helps ?.
Regards, Sarah.
Sorry to hear situation troubling you Joanne. I don't have children.., and often wonder how KC patients cope. I don't know what Social Services could do.., but would imagine it would be a good starting point. I have a friend who is a Social worker and could certainly make some informal enquiries with her if that helps ?.
Regards, Sarah.
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Joanne,
Instead of contact lenses, have you thought of Sclerals?
There have been many good reports here about how comfortable they are for those who can longer tolerate RGP's. This might delay the need for a graft depending how rapidly your KC is changing. If a graft is still necessary after using Sclerals, your toddler might be at school.
Just a thought.
Gareth
Instead of contact lenses, have you thought of Sclerals?
There have been many good reports here about how comfortable they are for those who can longer tolerate RGP's. This might delay the need for a graft depending how rapidly your KC is changing. If a graft is still necessary after using Sclerals, your toddler might be at school.
Just a thought.
Gareth
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wendy webb
- Newbie
- Posts: 1
- Joined: Sun 20 Mar 2005 1:01 pm
- Location: leics
west midlands
I too have had keratoconus for about 5 years and just found the web site!!! live in Hinckley and attend the Leicester Royal Infirmary. Not doing too well with hard lenses, about 2-3 hours wear, and because my right eye has excellent vision, arne't quite as commited to wearing it often enough( due to the limited vision with it)
Saw the consultant last week, who says he will see me again in a year(other appointments with the optromotrist in between) and said he is going to a seminar later in year, so there may be some new technology coming through . unfortunately he didn't say what!!!
The other thing i wanted to mention is does anyone who has this condition also suffer with what I have? Both myself and a friend who has recently been diagnosed also have a condition of the finger called Duputren's Contracture. the little finger is bent and curved. Just thought it very odd that we both have two very different medical conditions
Any info on a connection would be great.
Thank you. Wendy
Saw the consultant last week, who says he will see me again in a year(other appointments with the optromotrist in between) and said he is going to a seminar later in year, so there may be some new technology coming through . unfortunately he didn't say what!!!
The other thing i wanted to mention is does anyone who has this condition also suffer with what I have? Both myself and a friend who has recently been diagnosed also have a condition of the finger called Duputren's Contracture. the little finger is bent and curved. Just thought it very odd that we both have two very different medical conditions
Any info on a connection would be great.
Thank you. Wendy
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