Quicktopic posts: May 2001

[ScottC]

Hi,
Just found out about this site on my visit to Moorfields today..
I wear one rgp lens and one scleral which I have had for about 2 years. It was fine until a year ago until I started to get mucus build up with the scleral lens after wearing it for a few hours. It was suggested that using Miraflow cleaner rather than boston wetting solution was better? Has anyone else had any experience of a similar problem?
I'm 35, live in Cambridge and was diagnosed with KC about 15 years ago

Scott

[Whiteduck]

Do you think we could get some KC Group "business cards" produced and sent around all the Eye Hospitals in the UK for the Optometrists to pass out to their KC patients.

If we could include the website address and the postal address for those without IP access.

I am happy to contribute towards this to help others get in touch with us.

Your comments ? Regards, Ian

[Whiteduck]

As a follow-up to my last message this could be extended to those professionals who treat KC patients regularly.

You never know, some of them may be prepared (like Ken) to post some messages to our group - I have just emailed one optician I know of on the Internet to see if he could spare the time.

Regards
Ian

[Kim R.]

Hello All
Well Mike suggested for others to join in, so here goes!! You all seem so helpful and supportive and I've never "met" anyone with KC before.
I wonder if anyone can shed some light on my situation. I'm currently wearing Softperm lenses which are absolutely wonderful as I've had nightmares with the RGP - my eyes are just too sensitive. I've now been told that the blood vessels are causing a problem and time is limited with these lenses. With all this info I've found on this site, I mentioned sclerals as they seemed the ideal choice, but was told they are uncomfortable and I wouldn't be able to tolerate them!!! Everyone here sounds so positive about them.
Anyway my actual question is they are now going to fit me with large soft lenses which have just come out on the market - my sight may not be as good but it will help with the blood vessel problem as my Softperm "stick" onto my eyes at the moment. Does anyone wear them? Or have any advice? Should I persevere with trying to get sclerals fitted?
Oh yes, I'm also allergic to all preservatives in any cleaning, saline, allergy drops ect, and I'am waiting to be desensitized against other allergies that I have, to help me with wearing the lenses - anyone had any success with desensitization?
Well I feel very selfish rambling on about myself but any info, tips ect will really be appreciated.

[freddy]

Whiteduck

I really like the idea of info at Eye clinics re KC message link. DOes the KC group that is organised by Anna Klepasc do this, or could they, if we contributed to help finance it? This group is run out of Moorfields I think.

On an anecdotal level the only time I mentioned the US based KC-Link and how helpful I found it could be to "chat" with others re KC to the eye surgeon I got an old fashioned look. He was sceptical and worried about the advice. THis is wise, but message lists do have Optometrists or doctors
who also participate, so any glaring errors can be corrected.

By the by I am now 5 weeks op. My eye is clear and painfree but vision is still blurry in operated eye so reading is SLOW! I am enjoying the time off work more now and I have been able to catch up with some family and friends, which is lovely.

Freddy

[Elaine]

In ansa to some questions,yes 12 was very young to have grafts but i suppose at the time it was my only option. Perhaps ken could shed some light on how unusual
it was 30yrs ago.I've never really thought about it.All i remember was struggling to see at school and being labelled a lazy,not much up top student.After my first op the bandages came off and they took me to a window
to see the moon and stars for the first time.That accuracy of sight is now only poss with my lenses which i often put in just to look at the sky!Really i would recommend grafts to anyone faced with that decision. The risks are
fairly minimal I'm sure-though i am certainly no expert.the joy of seeing again far outway the risks. My grafts cannot be redone because of rejection problems second time around,although i often wonder if anyone in say america
would be prepared to take the risk that british surgeons won't.

hope freddy is doing okay.It would be interesting to hear how the prosess of
post-graft treatment has changed since my op.

Elaine

[Alex]

Elaine

Thanks for the evocative message. It made me remember the first time I tried my new lenses. I walked out of Kent & Canterbury Hospital (I had grown up only 100 yards from there) and saw, for the first time it seemed, leaves on the trees. I stood for some time staring at the motion of the individual branches as they twisted gently in the breeze. It was a very emotional moment.

I am so sad that contact lenses have not proved the answer. At first they were a complete revelation. I had no idea that there were so many stars in the sky - or that you could sometimes see your reflection in a girls eyes.

Now I have my graft in my right eye and there is single vision once more. Now I just have to decide what to do about the left one!
Good luck

Alex

[Alex]

Kim

Wow - how do you manage? This allergic sensitivity sounds a nightmare! I'm afraid I have no helpful answers about the sclerals though I must admit have heard so much about them I would like to see one. This "desensitivity" you mentioned sounds amazing! What is it? And what do they actually do?

Cheers
Alex

[Alex]

Dear Whiteduck

Is that a Red Indian Name?

Alex

[elaine -----dover]

this is just an experiment to see if i can actually master i.t. enough to manage clicking on the right box! Is there anyone out there who is just as useless with these machines as me i wonder! At least typing errors can be blamed on bad sight!
It's a shame coffee in canterbury didn't materialize-perhaps enother time now the weather is so glorious.
I have fad a good week with my lenses this week-this is possibly because sometimes the eyes just need a break from being messed about. I'm sure Ken would have a fit if he saw the surroundings i am in when taking lenses in and out,but when wearing periods are limited car parks are very useful. ooops it's late i have to go.