To all who have joined this forum recently

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

ian campbell
Newbie
Newbie
Posts: 1
Joined: Tue 29 Mar 2011 11:38 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby ian campbell » Tue 29 Mar 2011 11:56 pm

Hi,
this is my first post, i have lived with KC for years doing nothing about. But now the last 8 years i've had a small hard lens in one eye and an 18mm sclarial lens in the other.(excuse the spelling)i can wear the small one all the time and i wear the larger one when i work( in an office, three computor screens). Just to let people know there is hope, i couldn'see a bean before and it still amazes me when i put my lens in every morning. Once the second larger lens is in the my world is totally transformed........all good but a bit of patience is needed.

Enjoy

Ian

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Anne Klepacz
Committee
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Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Wed 30 Mar 2011 9:03 am

Hi Ian and welcome to the forum.
Thank you for your positive post. As you say, it can take a while to find the best lens or combination of lenses for each one of us. But there is usually something that will work given a bit of perseverance both on our part and that of the optometrist!
All the best
Anne

Rob + Kim
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Newbie
Posts: 1
Joined: Fri 20 May 2011 6:08 pm
Keratoconus: No, I don't suffer from KC

Parents of new KC pre-teen -NEED HELP

Postby Rob + Kim » Fri 20 May 2011 7:08 pm

Hello!
We are parents (Virginia,USA) of a newly diagnosed KC preteen. We are getting confused with all the info out there. Our Opthalmolgist is recommending our child to go to a doctor in Washington DC, USA to have CxL done peri-on, but said something regarding abbrassion/ rubbing the peri? or cornea??. Our doc says he doesn't agree with California,USA doc regarding peri-off. When researching websites - most info is not dated nor the author/ doc name given. Since CxL is new here in the states and still on going the clinical trial stage and not approved yet by the FDA, I'd much rather be getting my info and advice from European doctors who have done the Cxl procedure for 8 to 12 years. Can anyone recommend a KC doctor I could contact to get some questions answered or do any docs with 8 + years experience with CxL answer questions on this website?

We started looking at the NKCF forum - just browsed a bit and never sent a post; it seemed that the hand full of posts we read were regarding KC patients 30 to 40 years old. And much of the replies were from one man, who wasn't a doc - great info re: his CxL process and highly recommeded a doc --But, that was only his opinion and depended how much he researched and where he received his information and only his one experience. The research we have done gave us much of the same info as the man on the NKCF forum, but again we could not find any current postings on what the KC specialists in Europe are doing and their thoughts on the peri-on technique.

Being that our child is so young, we would like for her to get the best posssible treatment for her KC (beginning stages at 12'2010, in both eyes) and the right doctor too.

Our questions:
1. In Europe, are the docs still doing CxL peri-off? Or is CxL peri-on a new technique the doctors are using in Europe too? If so, RE: CxL peri-on, has research been done and are the results the same? Do they believe the results of peri-on would be as long lasting?
2. Are the European doctors rubbing or using some form of abbrassive to rub the peri or (other)? before adding the Riboflaven drops?
3. My child is very shy with adults and a bit sensitive, will this be any problem during the CxL surgery?
4. Can anyone recommend a doc in the USA with a lot of CxL experience?
5. How long should the CxL surgery slow down the prgression of her KC?

Thank you for your attention to our concerns. We look forward to a quick reply. Our child believes her eyes are getting worse the past few weeks, so we would like to get something done soon for her.
Sincerely,
Rob + Kim

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Anne Klepacz
Committee
Committee
Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Fri 20 May 2011 8:34 pm

Hello Rob and Kim and welcome!
I hope someone with some CXL experience may come along shortly to answer some of your questions. But as far as I know, in Europe CXL is done by scraping the top layer (epithelium) of the cornea - what I think is referred to here as epi-off which I guess is the same as your peri-off. The team with the longest experience is the one in Dresden who invented the procedure (Seiler, Spoerl and others). If you use the search engine on this forum and put in 'crosslinking' you should find quite a few experiences, though I'm not sure if any are as young as your daughter.
All the best
Anne

ginny077
Contributor
Contributor
Posts: 12
Joined: Fri 27 May 2011 9:45 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby ginny077 » Fri 27 May 2011 10:02 pm

Hi, Would love to hear from anyone who has had the same problems I am having after receiving a deep graft last May. I had quite good sight in the eye after the op, even though my iris was starved of oxygen during the op, but after having the stitches removed two months ago I have limited sight and cannot even read a newspaper. I also cannot drive which I miss.
I am off the scale for normal contact lenses and cannot tolerate hard ones.
Work are making my life hell as I am having numerous appointments at opticians and local hospital (after attending Moorfields for ten years they didn't want to know about transplanting so I had to go elsewhere.) Before the op I suffered from numerous bouts of Iritis and ulcers on my cornea.
I have now a hybrid lens in my right eye which keeps getting greasy and I find it needs cleaning every hour. If I can't clean it I can't see as I have nothing in my left eye at all. Am I likely to ever see through my left eye again? It's now been about four years since I had sight in it. I did have an intac fitted but that had to be removed as it didn't work at all. At the moment I can't see any light at the end of any tunnel!!!!!!.

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Anne Klepacz
Committee
Committee
Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Sat 28 May 2011 8:57 am

Hi Ginny and welcome!
It's really disappointing when the vision goes downhill after the stitches are removed. That happened to me after one of my grafts so I can imagine how you feel. But with contact lenses I now get good vision. If you can't tolerate the normal rgp lenses have you tried piggy backing (wearing a soft lens underneath a hard one) or scleral lenses (the ones which cover the whole eye). If you e-mail anne@keratoconus-group.org.uk with your postal address, there's various info we can send you including something on all the different lens types now used for KC.
As far as work is concerned, have you found the leaflets about KC and work on the home page of this website www.keratoconus.group.org.uk/sitev3/publications/html that you can download? And if you're free on 18th June, do come along to our conference. One of the sessions will be about employment issues and the help available, another about all the different contact lenses.
Things are obviously very tough for you now, but I hope you'll find a glimmer of light soon.
Anne

ginny077
Contributor
Contributor
Posts: 12
Joined: Fri 27 May 2011 9:45 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby ginny077 » Sat 28 May 2011 6:50 pm

Thanks for your quick reply. Yes I have tried piggy back and the large and small "squirrel" lens as I call them, but they always had bubbles underneath which affected my sight and were really uncomfortable to wear. That is why I had the graft as I seem unable to tolerate anything but soft, well soft perm, but they have now stopped making them. This is why I have the hybrid lens in my right eye which isn't as badly affected as my left eye. Thank you for the link I will download the info tonight and take it into work with me. I don't think I would be allowed to take 18th off as we are short of staff, but then we are always short of staff as I work in a bank, but I would have loved to attend. Where would I find more info on the 18th? I know I am down to work on that Saturday. Getting to the venue would be yet another problem as I usually only go out with my husband. My customers are more interested and care more about my sight than my colleagues do especially my Manager!! I must admit their attitude is really depressing me.
When you find out you have keratoconus, I've now had it for 28 years, no-one I speak to has ever heard of the disease. It's nice to know there is a site around for people who are newly diagnosed and need information.
Thanks again.

Duguu
Newbie
Newbie
Posts: 2
Joined: Mon 06 Jun 2011 2:28 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Duguu » Tue 07 Jun 2011 10:40 pm

Hi All

I am new here and it is my first post. I have had KC for for over 20 years and it was discovered by accident as I volunteered for laser surgery due to my very short sight. Whilst gong through the checks at Moorfield in London I was told that I had KC and was not elgible for surgery but they could look after my eyes - since that day I got to Moorfields at least once every year. My sight was corrected with RGP lenses and I have been using them for all this time with the usual problems of grit etc and I have actively played field hockey at a good level. Since last year, my eyes are very sensitive to bright light and I have to wear sunglasses and I am finding it difficult to drive at night and I tend to struggle with spreadsheets after working on them for an hour or so.

I just wanted to know what other people's experiences and I have an appointment coming up and will mention it to them. this is now affecting my ability to do my job, I have never taken any sick leave because of my eyes etc...what sort of support network is available so that I can inform our HR about this condition. Also, I note that there is the annual conference coming up on 18 June, what do I do to join this.

Thanks

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Anne Klepacz
Committee
Committee
Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Wed 08 Jun 2011 8:46 am

Hello Duguu and welcome to the forum!
It sounds from what you describe that your KC was quite mild when you were first diagnosed and that it has stayed pretty stable until recently. The symptoms you describe (sensitivity to light, needing to wear contact lenses, finding night driving and reading spreadsheets dificult) are all very common effects of KC and you've done very well to go 20 years without experiencing them! But do mention all this at your next appointment - hopefully a change in prescription or the type of lens will help with at least some of them.
As far as work is concerned, have you found the leaflets about KC and work that you can download from the home page of this website? http://www.keratoconus-group.org.uk/sit ... tions.html
And do come to the conference where there will be talks about the help available at work and about the variety of contact lenses available. You'll find more details of the conference at
http://www.keratoconus-group.org.uk/eve ... rence.html
As it says there, if you e-mail me anne@keratoconus-group.org.uk I will send you a booking form which you need to get back to us quickly. And if you also e-mail me your postal address, there are booklets and DVDs about KC I can send you.
All the best
Anne

ginny077
Contributor
Contributor
Posts: 12
Joined: Fri 27 May 2011 9:45 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby ginny077 » Wed 08 Jun 2011 11:46 am

Hi Anne,
Have managed to swop Saturday 18th with a colleague so will be able to attend conference. Am about to complete my booking form now.
Have had to take another sickie today as hybrid lens so greasy yesterday at work I was unable to see to do anything! Kept cleaning it every fifteen minutes but no luck. At lunch time felt like stamping on it! I should also have shares in painkillers, why do I keep developing headaches??? I think I already know the answer to this one!
Husband had to drive me, yet again, to the local hospital as I had an appointment with my eye specialist. He saw me himself and after waiting over an hour to see me confirmed he needs to operate on the cornea again. Within the next month he will make small cuts in the cornea and then stitch them up!!
It seems to me that keratoconus is a very hard disease to get on top of.
Said to another colleague I was attending the keratoconus conference on 18th. She thought I said I was spending the day listening to Kerry Catona. Sorry don't really like her so not sure if you spell her name like this!!!
Hope to see you all on 18th.
Ginny


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