Quicktopic posts: May 2003

[Laurence Power]

Thankyou all for your advice,I have spoken with Anne and have sent all the forms back to join the group and the meeting in june.I have had a long chat with my work about KC and thier responce has been great I now have a 21 inc screen for my pc and a new laptop with a 17 inc screen.Time off is not a problem as I can have as much as I need.The Doctor I had to see for a reffral did not know that much about KC but with the help of Anne and the book she sent from Moorfields she has a better understanding.The main problem I have is nhs waiting list and where to go as thier are two hospitals I could attend.But I will keep up the pressure to get seen.Hopefully I will be able to meet up with some of you in june. Thanks again Laurence

[Louise Bartholomew]

Hello, I was diagnosed with KC at 16 years old. I am now 28 but do not wear lenses. When I was first diagnosed no treatment was offered and I was sent away to return for a check up every six months, each time seeing a different doctor. I went to University for four years and did not see an Optician in that time. When I finished Uni I decided to try again and this time the use of lenses was recommended. The optician I saw for fitting was supposed to be an expert but he was diabolical. I tried two types of lens but both types caused me so much pain and discomfort that I couldn't leave the house with the lens in (I only needed one for my right eye) The Optician was entirely unsympathetic - he didn't teach me to use the lens properly and the best he could do was try and frighten me into using it by threatening a cornea transplant as the only option if I didn't! I am ashamed to say that I gave up in the end and haven't been back to an Optician since. Five years on I know my right eye has worsened and I am sure that my previously perfect left eye has begun to deteriorate. I have made an appointment for an eye test at Boots in Watford and am seeing an alleged KC specialist after the test. With the help of the Internet in general and specifically this website I feel that I have an understanding of my condition for the first time. I felt ignorant and alone before. Having read your positive stories about the use of lenses I feel determined to try again and this time I will demand the treatment and understanding that I know I deserve. I would be glad to hear from anyone who could share their experiences with me or offer me any advice. lou.bartholomew@btopenworld.com

[Andrew Bosanquet]

To Louise Bartholomew
How awful to get such a disgraceful optician. I, too, went through Uni squinting at everything. Before you agree to anything, what about getting your GP to refer you to your local hospital or eye hospital? I lived near Watford when I started to wear small hard lenses and went into Moorfields for fitting. It was worth it – I got one of the world’s experts and I wore the same (non-gas permeable in the mid ‘70s) lenses for 10 years without a hitch. If you get the same advice from two sources, that would give you greater confidence. I believe I am right in saying that most people fitting lenses these days are fitting soft lenses. You will probably need hard lenses for KC - find the expert.
Best wishes in your search and well done for tackling it again.
Andrew

[aimee.wilkes@bt.com]

Hi,

I have just had my lenses fitted and I have been wearing them for 4 days now in the evenings. I am slightly concerened that they are still very blurred and i cannot really see very well with them in, this is why I only wear them at night at the moment. I know this must sound mad but is it normal for the lenses to still be blurred after 4 days of trying to wear them, The blurring has lessened each time I have put them in, but i guess I am just a little concerned. Can anyone reassure me that eventually I will be able to see ok ?.
Thanks

Aimee

< replied-to message removed by QT >

[Lois for Stacy]

Hi KateF,

Thank you for your reply to my msg, which I have just read and have enjoyed hearing about Dale. I can certainly relate to many issues that you share about him. Downs people are very special, but can be very challenging. I certainly commend you for adopting Dale and he is one lucky person! Your message gives me hope for Stacy and for that I thank you.

I am new to this site and have not heard about Ken Pullum. Would you please share his background and where he is located and how I can get in touch with him?

Good luck with the scleral lens and keep me posted on how it's going. Sure hope this improves Dale's vision. I am now hopefull that Stacy will be able to become a candiate for a lens to improve her sight.

Good Luck!
Lois

Thank you and am anxiously waiting to hear back from you

[John Smith]

Hello Lois,

Ken Pullum is quite famous around here ;-) He has a specialism around scleral (very large) lenses, which are particularly suitable for lots of us with KC.

He certainly works at Moorfields, and I think he sees people privately at Hertford too.

I hope you can get Stacy's vision improved soon,

John

[John Smith]

Andrew,

You're right about the varying standard of opticians. The lady I've been seeing for a few years is excellent, and the "backup" I saw last time she was on maternity leave was pretty good too.

Recently however, I'm slightly frustrated. My consultant has advised me that my RGP lens on the left eye needed replacing because it was causing abrasions, and the spectacle lens for the right needed replacing as my eye contined to heal post-graft.

Unfortunately, both the regular and backup ladies are now on maternity leave, and I saw someone else. I'm sure that for most people, she's a perfectly competent optician, but for me... well, I came out with no new specs prescription (not changed enough to be worth bothering with apparently) or a new RGP lens (that's the best fit you're going to get. I should wear my lens less). Hmmm... The final straw for me was when she announced that she'd see me again in a year's time. Not likely!

Thankfully, the RGP lens was only for a backup, as I'm seeing Ken this week for my first scleral lens.

The moral here: when you find an optician who understands KC, follow them to the ends of the earth!

[KateF]

To Lois and Stacy
try these !
http://www.kcenter.org
http://www.hkcf.org
http://www.keratoconus-group.org.uk (try and get to the June Saturday conference)
http://www.bradleyduck.com (I like the sense of humour!)
http://www.sclerals.com
ken replied to one of my messages somewhere - I had no idea he was someone who was top man inthe field so I struck lucky! I cant even find where i posted the message now, much muddle in my brain. But he left me a phone no and i went straight from there to taking Dale to his clinic. Today I heard that he has arranged for the local NHS to pick up the prescribing and fitting so we are another wobbly step on the way to NHS scleral contacts - really scarey and exciting.
This is so rare for me to feel hope for Dale (for new readers Dale is 17 Downs difficult blond and charming!)and I'm upset with myself for accepting poor vision for him for so long.
And upset for everyone that has to pay for contacts too.
Ken says I can give you his details (good guy) so e-mail me on
kdfarminer@tiscali.co.uk and we'll get personal!!
kate

[Laura]

I have a little problem at the mo. I seem to be having a really bad time with the sun. I find I am having to wear sunglasses in the slightest bit of light. When I leave work I can't see a thing after being in the artificial light all day. And I had a bad experience at the zoo the other week, when I came out of a fairly dark enclosure and the sun really hurt my eyes even when I had closed them. Is it usual to be so sensitive to the sun? It was really quite a scary experience and is there anything I can do? If someone could please give me any advise I would be extremely grateful. Eother leave a message on here or post to my email which is Hlooby@aol.com. Hope you can help. Laura

[Andy]

THIS IS FOR LAURA,
I have had lenses since i was 18 im now 31 and in the last 2 months my eyes have been really bad in bright light,But my consultant here in Brighton is brilliant she got the company where she gets the lenses from to make some extra dark ones for me so i can see in bright light,and when i say dark i mean nearly black when you look at them, But im so glad i asked her for help this has made a HUGE difference to day to day life.Although they have taken a bit of getting used to...........