UK Keratoconus Self-Help and Support Association

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.

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

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

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.

Hermione,
Welcome.

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

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.

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.

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

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