Quicktopic posts: Oct 2002

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

Sue Ingram

Postby Sue Ingram » Wed 23 Oct 2002 9:49 am

Dear Ally, That is good news! Good luck with your new lens and don't worry, you will soon get used to wearing it - in fact after a while, you won't even realise it is on your eye. Keep us posted with your progress. Take care. SUE

sally bonds

Postby sally bonds » Wed 23 Oct 2002 3:15 pm

hi ulka could write a book on all the things that have happened since i was first diagnosed with KC, some funny some not so funny, but all bearable. My first graph was back in 1983. I was a major attraction for all junior doctors and nurses to beek at my local hospital as they did not see many cases of KC who recieved graphs. Noone told me what to expect but the pain wasnt all that bad and within a week my eye was starting to open and I could see a little this soon improved and the rest is history. Now when I visit moorfields they tell be my graph is to small and they are so much better at doing them now, but who cares that graph saved my bacon and did me just fine enabled me as a young girl to drive a car and apply for a job without dreading the medical. Ive have always suffered from every allergy in the book so contact lenses were no use untill for some reason they all seemed to go away life is funny like that, still have slight asthma but skin problems and nose problems all gone what a relief. Only you can decide to take the risk of a graph I read some of the problems on this page and count myself so lucky, and hope it holds out my whole life through am quite attached to my graphs now and hope to keep the same ones a life time. Good luck with what ever you decide to do. ifyou are lucky like me you can lead a normal life without any need for contact lences I was also recently offered lazer surgery to correct the short sight i have. so all options are open to you even when you have had a graph it is so amazing what these clever doctors can do one said to me once on a downer day dont worry sally technology will catch up with you what a comforting thought.

Ulka Patel

Postby Ulka Patel » Thu 24 Oct 2002 1:39 am

sally

thanks for sharing your story with me.............it was encouraging and good to hear you didnt even need to wear contact lenses. i am hoping i can delay my surgery for another 2 to 3 years and then i shall be more comfortable with the surgery. i want to still try scleral lenses before i go for surgery

ulka


----Original Message Follows----
From: QT - sally bonds <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com> Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com> To: ulkanp@hotmail.com
Subject: Keratoconus
Date: Wed, 23 Oct 2002 14:15:42 -0500 (CDT)



_________________________________________________________________ Internet access plans that fit your lifestyle -- join MSN.
http://resourcecenter.msn.com/access/plans/default.asp
< replied-to message removed by QT >

Gillian

Postby Gillian » Fri 25 Oct 2002 8:47 am

I would like to thank everyone who has contributed to this very active website for their help, advice, stories and moral support. As a long standing KC sufferer I know only too well how lonely one can feel with this condition and it is wonderful to have a group of people who really understands what we are going through.

I have had KC for years - diagnosed about 5 years ago but looking back realise I have had it for about 25 or 30 years. I have been wearing rgp lenses for most of that time. I encountered some allergy related problems for the last two summers. On advice from this website I now have schleral lenses which I wear once a week at the moment. The idea is that if/when this allergy returns the scheral lenses will be a useful alternative. After a very informative instruction it then only took me about half an hour to get used to them. They are good lenses and certainly well worth investigating for anyone who has problems with rgp and I would suggest a 'must' before considering a graft. They are large but as Sue Ingram said it is only that corneal lenses are so small. Once again, thank you all for just being there.

KIM_OBLIVION@YAHOO.COM

Postby KIM_OBLIVION@YAHOO.COM » Mon 28 Oct 2002 5:09 pm

I will start by saying I have just discovered this website being a new internet user and the last 10 mins has given me more information and encouragement than I have ever had since being diagnosed with 'Keratoconus'.
I was 1st diagnosed 5 yrs ago and was sent to the local hospital to see a specialist, well 5 yrs later after only seing the specialist on 2 occasions and after 5 cancelled appointments I was discharged and am once again in the care of my optician. In that 5 yrs I learnt nothing about the condition, was given no information and was basically given the run - around.
I attended the opticians last week for my 1st contact lens fitting and even though it was here I found out exactly what KC was I still came out feeling as confused and worried as ever. I was fitted with a gas permable lens for size and luckily enough the 1st one tried was a perfect fit, my prescription however was another matter as I was told my sight test readings made no sense? I felt so small as I was asked with which lens the letters were clearer, only to give my answer and then to be asked if I was sure! My prescription was guessed in the end and will be tweaked to obtain my final prescription. As you can imagine I left the optiacian very discouraged and acctually wondered whether all this was worth it taking into account the last 5 yrs and the fact that I still have 100% vision in my right eye.
It was at this point that I discovered this site and as I have said I learned so much more about KC and now know there is support out there, so much so I now know it is worth carrying on at the opticians and that with a little time and patience all will be well! This site has certainally answered a few of my questions and has put my mind at rest.
If there is anyone who would like to share their story with me or to pass on tips, advice or info I would be most grateful - Sorry I rambled on so much! Thank you all.

Sue Ingram

Postby Sue Ingram » Tue 29 Oct 2002 8:30 am

Hi Kim, Welcome to the site; we are glad it has been of use to you. I am sure your story is reminiscent for many people who have KC - it seems to be very difficult to find a practitioner who understands, can help you and is willing to spend the time doing so. The KC Group is doing a grand job in trying to raise the awareness of KC and the website and this discussion page have gone a long way towards achieving such.

Good luck with your lens and let us know your progress. Remember, if they do not get it right first time, keep persevering and pressing them until you are comfortable with the fit and can actually see with the lens.

If you have any questions, need any help or support, please do not hesitate to post another message or you can always email me direct on sue.ingram@virgin.net. I have had KC for over 25 years and will do my best to allay any fears you may have and answer your questions to the best of my knowledge. Take care now and keep smiling :-) SUE

ali cooper

Postby ali cooper » Tue 29 Oct 2002 9:14 am

Hi Kim,

Welcome to the board. I am sorry to hear that you have not had the care that you should have had. It is scary enough to be diagnosed with such a condition without having the support there available. I am glad you feel you can find that support here, I know I certainly have. I would suggest a change of Optitian, preferably to one with an interest in or specialist in Keretoconus (KC). You asked for our stories, well here is mine;

I have been diagnosed for about 3-4 months now. I first went to a local optition about a year ago because I noticed I was becoming blurred in my left eye. I have been treated for a squint correction twice and I thought it was my eye becoming 'lazy' again. The optition told me that I had a dent in my eye and asked me if I had bumped it or had been hit in the eye at anytime. I said I couldn't recall such an incident to warrent the damage he saw. He said that there was nothing that could be done and that I would basically have to live with the visual distortion (so I can empathise with the lack of understanding you have received).

I believed what the optitian had told me, after all I had no reason not to. A year later my vision had deteriorated a bit more in my Left eye and as I have had 2 ops in the past I decided to keep up with the annual check ups and so made another appointment with another optitian. I went to Boots Optitians and I saw the Consultant Optemetrist there, he did the most thorough eye exam on me that I have ever had (and this was before I was ever told about KC) After all the tests he told me I had KC. I asked what that involved and what the worst case scenario would be, he told me that I could face corneal grafts. He suggested referring me to the hospital eye department and I got my appointment and then saw the contact lens specialist, he tried me with a Rose K lens and it worked wonderfully and now I am getting one made for my left eye only (although I have some KC changes in my right eye I still have v.good vision through that eye) I am actually looking forward to having it fitted whereas before visiting this site I would have been terrified but the gang here have laid any fears I had to rest. In fact the contact lens speciallist was very pleased I had found this group for information and support.

The group here has been great and the advice has been fantastic. I hope you get sorted soon.

Ally





>From: QT - KIM_OBLIVION@YAHOO.COM
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: alicooperuk@hotmail.com
>Subject: Keratoconus
>Date: Mon, 28 Oct 2002 16:09:27 -0600 (CST)
>


_________________________________________________________________ Surf the Web without missing calls! Get MSN Broadband.
http://resourcecenter.msn.com/access/pl ... vation.asp
< replied-to message removed by QT >

KIM_OBLIVION@YAHOO.COM

Postby KIM_OBLIVION@YAHOO.COM » Wed 30 Oct 2002 4:44 pm

To Ali & Sue,
Thankyou both for your replys it is such a comfort to know that if I share my fears with the site they will soon be laid to rest. There have been no more further developments on my part but I will keep you posted and will probably be ready with lots of questions I need answers to! I feel relieved that you can empathise with the feeling of being all on your own when it comes to opticians, I feel that I have had the most rotten of luck but as they say 'Things can only get better'! I am now confident about the future, I realise it will be a long journey but it will have great rewards in the end. Thank-you again, Kim.

Tony Stigle

Postby Tony Stigle » Thu 31 Oct 2002 6:26 am

ATTENTION ALL READERS.

IMPORTANT NEWS FLASH ON WEB SITE.. PLEASE READ.

http://www.keratoconus-group.org.uk

Tony.

..

Postby .. » Thu 31 Oct 2002 6:40 am

Next West Midlands meeting date 'Living with Keratoconus'
11am Saturday 2nd November at the Eye Centre, City Hospital,
Dudley Road, Birmingham.
For more info, contact Marion Bargery
01746 767906.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 42 guests