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Re: To all who have joined this forum recently

Posted: Wed 09 Feb 2011 1:48 am
by Damned
Hi im 21
Im a uni student, and ive had KC for about 6 months and i HATE it! Nobody understands the hassle KC brings to our life. And who wants to whine about it to their friends and family? Because its so unknown, nobody really shows any meaningful understanding. Like how i cant see when im playing footy anymore. How my friends smoking around me makes my eyes hurt, but i dont wana burden others with my problem. How in uni, im fallin asleep cos of ma lenses. I always have to make time to put them on in the morning, so if i ever wake up late like i used to and rush off, i cant anymore, cos i gota spend time cleanin the damn things then puttin them on! Its frickin annoyin these damn Hard lenses and this damn KC c**p! Scientists should hurry up and just find a ruddy cure!

Re: To all who have joined this forum recently

Posted: Wed 09 Feb 2011 7:17 am
by Andrew MacLean
Hello D and welcome to the forum. I don't think that anyone here will disagree with your anguished cry for an early cure for keratoconus.

In the meantime, there are things that we can do to educate others in the problems we have. Have you found the fact sheet area of the website? The group publishes leaflets that you can print off and take to people like your advisor of studies or employer

http://www.keratoconus-group.org.uk/sit ... tions.html

Every good wish

Andrew

Re: To all who have joined this forum recently

Posted: Mon 07 Mar 2011 2:17 am
by Lancashire
Hello joined tonight.

I am an Optician based in Lancashire who treats quite a few Keratoconus patients, mostly with contact lenses.

Re: To all who have joined this forum recently

Posted: Mon 07 Mar 2011 9:38 am
by Lynn White
Hi Lancashire!

Welcome to the forum! You will find lots of interesting threads here. Also, as you know, KC patients tend to be fantastically well informed so we optoms tend to learn things as well!

Lynn

Re: To all who have joined this forum recently

Posted: Mon 07 Mar 2011 11:46 am
by Andrew MacLean
Lancashire

Welcome to the forum!

Re: To all who have joined this forum recently

Posted: Fri 18 Mar 2011 2:19 pm
by Racemech
i have keratoconus in both eyes and after getting £500 pound new glasses and having problems with the vission with them i was told i needed to get contacts fitted and still have a pair of very expencive tags that are usseless to me to say i,m unhappy with that optician is a understatment have been trying all different types of lenses soft , soft/ridged rgp and & large ridged wich i am on now and am being fitted up for kerasoft at the moment i have very senstive eyes and the problem is redness in my eyes from the lenses contact on my eye if i get a lens that dosent make my eyes red it dosent fitt close enough to get decent vission i,ve been going to appointments every 3 weeks for lens fittment to try to get a result for the last year i would like to find the optican at the forefront of my keratoconus problem in the UK to get my vission sorted who is the best in this feild ? i need help to get my vission back as now i,m stuck with wearing lenses and i have had worse vission with them than my glasses that i orignaly had to replace with the tags huers as i broke a lens and then after getting those and complaining that my vission wasent grate with them (not as good as my previous glasses with broke) they told me i needed to go to the NHS and get lenses
i,ve been trying to get my vission sorted but i travel a lot for work (formula one mechanic) so every 2 to 3 weeks when i,m back in the uk i have an appoitment and get new lenses to trial and ussally have lenses made while i,m away to get fitted when i,m next back i work in a enviroment that has the best of everything products parts suppliers drivers and personel now i,m looking for the best person in the feild of keratocouns in the UK to take a look at my eyes please email me at racemech@hotmail.co.uk
I,m currently in norfolk but dont mind the travel to get a result

Re: To all who have joined this forum recently

Posted: Fri 18 Mar 2011 3:57 pm
by Anne Klepacz
Hi Racemech and welcome to the forum.
As you're finding, it can take a while to find the best contact lens for you and it can involve trying a lot of different types which is time consuming and frustrating. But hopefully you will get there. You mention Kerasofts - one of the regular professional contributors to this forum specialises in those, so she'll probably reply to your post. (By the way, you might want to take your e-mail address out of your post as you may end up getting a lot of spam by putting it on a public forum!)
All the best - I'm sure you'll get there eventually and find lots of support here.
Anne

Re: To all who have joined this forum recently

Posted: Fri 18 Mar 2011 4:04 pm
by Andrew MacLean
Racemech

Welcome to the forum.

It is not clear from your post whether you have been referred to a hospital ophthalmology clinic? If not, ask your GP to set up a referral. The ophthalmologist (eye doctor) will send you either to a hospital contact lens specialist or to someone in the private sector who handles contact lens work for the hospital.

Either way, you will see on optometrist who has experience of fitting KC eyes.

One thing: you should ask your doc for your original ophthalmology referral to be to a hospital with at least one cornea specialist. Someone who sees mostly glaucoma patients or macular disease may not have much experience with KC.

The referral to an NHS contact lens specialist will put you into touch with very good prices: an NHS lens is dispensed at a cost to the patient of around £55** per lens, but if your prescription or fit changes within 12 months, new lenses are covered by the price you have already paid.

All the best.

Andrew

** When I originally posted this comment, I miskeyed this figure. Thanks the the sharp eye of Anne, I was made aware of my error, and have corrected it here.

Re: To all who have joined this forum recently

Posted: Fri 18 Mar 2011 4:20 pm
by Anne Klepacz
I think Andrew meant to say £50 per lens - wouldn't it be nice if they were only a fiver!
Anne

Re: To all who have joined this forum recently

Posted: Fri 18 Mar 2011 5:31 pm
by Andrew MacLean
((blush))

Yes I had meant to say £55. I am posting from my iPhone 3

Thanks Anne. I have corrected the original post.