Hi from a new girl

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

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Hermione Granger
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Contributor
Posts: 10
Joined: Sun 17 Jun 2007 10:14 pm
Location: Midlands

Hi from a new girl

Postby Hermione Granger » Sun 17 Jun 2007 10:26 pm

Hi all. I feel like I'm joining this a bit late as I've had all the treatment I'm going to get for my eyes. I also feel rather stupid for not thinking of looking for a site like this when I was diagnosed and when I was at my lowest because of my eye condition. So, maybe now I have found this site I can be of some help, share my experiences and give others some well-needed support.

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John Smith
Moderator
Moderator
Posts: 1941
Joined: Thu 08 Jan 2004 12:48 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Sidcup, Kent

Postby John Smith » Mon 18 Jun 2007 1:30 am

Hello Hermione, and welcome to the forum.

Thanks for offering to help out, and to share your story, I'm sure we'd all love to hear it :lol:
John

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tommy.dean
Regular contributor
Regular contributor
Posts: 111
Joined: Tue 10 Jan 2006 11:13 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: Blackburn
Contact:

Postby tommy.dean » Mon 18 Jun 2007 3:03 am

hey hermione, nice to see you found the forum it's a brilliant resource for us keratoconics. What treatment have you had on your eye's? I've kinda had all treatment I'm going to have as well but i come on here it's a good place to vent :).
tom

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GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Mon 18 Jun 2007 7:39 am

Hi Hermione,

If you register your details with the group (see cantact details link on home page), you will be on our mailing list. Then you will get invites to all the Midlands group meetings. Currently held at the Birmingham Eye Centre, but hopefully we can expand so we have meets at Coventry Eye Unit and perhaps Leicester too.
Gareth

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Matthew_
Champion
Champion
Posts: 814
Joined: Thu 13 Jul 2006 3:13 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Gallafrey

Postby Matthew_ » Mon 18 Jun 2007 9:41 am

Hermione,
Welcome.
Image

Get a life...get a dog!

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Sweet
Committee
Committee
Posts: 2240
Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Postby Sweet » Mon 18 Jun 2007 9:58 am

Hermione,

Hello and welcome to the forum! Please don't feel bad about not looking for a place like this earlier, you have done really well on your own and that is the main thing!

It would be really interesting to hear your story! It would help others to decide on their treatment as well. I have had one graft and am hoping that I never need one for my other eye, but I will just have to take one day at a time.

Hoping to see you posting again soon! Love Sweet X x X
Sweet X x X

Image

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Michael P
Champion
Champion
Posts: 836
Joined: Mon 30 May 2005 10:34 am
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: London

Postby Michael P » Mon 18 Jun 2007 10:58 am

Hi Hermione and welcome.

It is never to late to join us.

One minute we can be helpers and the next in need of a bit of advice.

Please do not be afraid to tell us your story.

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Hermione Granger
Contributor
Contributor
Posts: 10
Joined: Sun 17 Jun 2007 10:14 pm
Location: Midlands

My story in brief

Postby Hermione Granger » Mon 18 Jun 2007 9:13 pm

I first consulted a gp as my eyes were constantly itching and I vision was deteriorating. After seeing gp after gp with no joy, I asked to be referred to a specialist. Finally, I had a diagnosis - allergic conjunctivitis and Keratoconus. I was advised to try a contact lens in my left eye & was told that given my age (think I was around 25) my vision shouldn't worsen much. The lens did improve my vision but I couldn't tolerate it due to the itching. Within 6 months I had nearly lost the sight in my left eye and was told a graft was the only treatment. Due to the allergies I was referred to a more experienced specialist in Reading who was great (and very good looking!!). I had a full graft in my left eye and the day after my op I wished I'd just left it and gone blind. The week after the op, I thought .. well ok maybe it was worth it. It was a long recovery - 18 months before the stitches came out, my vision settled & I got glasses about a month after that. I had to give up work for 2 1/2 yrs (from 1 yr before the op) and it was a real rollercoaster. My days varied from depressed, very depressed, tolerating life, to depressed again. I split up with my husband in the process as it all just got too much. Now tho I have a new life and a new(ish) cornea. My surgeon was great (he put up with a lot as I'm a total wimp and oh how I hate those pressure tests). I moved to Birmingham a couple of years ago and had to see a specialist here for 6 monthly checkups in order to get the steroid prescriptions. Well, he took me off them a year ago and all is well .... and last Monday he discharged me!! No more hospital waiting rooms. The vision in my right eye isn't great but it doesn't warrant a graft and hasn't worsened over the last few years. Anyway, sorry for the lengthy post and I hope I can make up for it by helping some of you through the whole experience.

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mike scott
Chatterbox
Chatterbox
Posts: 188
Joined: Mon 19 Jun 2006 5:17 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: manchester uk
Contact:

Postby mike scott » Tue 19 Jun 2007 10:31 pm

Hi Hermione

Welcome to the KC Group family

KC is such a variable and un predictable condition affecting us all in so many different ways, the one thing that really stands out for me is that it can be totally life changing and this has held true for you as well.
Like yourself i believe KC was a major contributor to the break down of my marriage as well.
I am on the list for a transplant in my left eye but the saving grace is that my right eye is still quite strong with correction. although the KC in my left is severe now i have to say that i constantly swing from being reasonably ok about the graft to being very apprehensive to the point of not having it until my sight fails.

Your input and experiences will be very valuable and much appreciated for all of us as the more information from personal experiences that is made available makes making informed decisions more accurate.

Very best wishes to you and long may you continue in rebuilding a good life

Mike
onwards and upwards

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Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Postby Andrew MacLean » Wed 20 Jun 2007 5:57 pm

Hello Hermione and welcome to the few the happy few, the band of sufferers who travel this road and tarry a while to carry each other across the uneven way.

(apologies to Mr Shakespeare)

Hermione, like the others, I am glad you found us: it is never too late to join the happy throng (but that is another metaphor so here I had better stop).

Andrew
Andrew MacLean


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