Quicktopic posts: Dec 2002

[Sue Ingram]

Hi Deborah, so sorry to hear that your daughter was diagnosed with KC at such an early age - its bad enough when you are a teenager/adult. However, I definitely feel it would be worth you getting on the waiting list for a hospital. I attend Moorfields Eye Hospital in London and they charge approximately £40 for one lens on the NHS (much much much cheaper than the real cost of a scleral lens!). I also get all my solutions and the Amidose for the sclerals on prescription charges which also makes a tremendous difference. Where do you live - would Moorfields be your nearest hospital or would it be another one?

Once your daughter has got the hang of putting the sclerals in she will find they are 100% more comfortable than the gas permeable rigid corneal lenses (and you cannot lose them!). Tell her not to be too worried when she first sees them - they do look a bit scary but you soon get used to them. I felt that way and I was 37 at the time! Take care and keep us informed of your progress; if you daughter needs any advice or support once she gets scleral lenses, we are here to help. Good luck! SUE

[Payne Family]

Message for Sue (and anyone else who wants to listen)

We live in Yorkshire (which can be a bit sleepy) and I don't know if we would be referred to Manchester or Leeds.

We have tried so many lenses and I know that scleral lenses are the way forward but we have been told that they can cost around £1000.

Many thanks for your email as I will now get re-referred to the hospital (where ever that may by) and get Katherine's lenses on the NHS. I feel that it is a great pity that if you go through your optician you have to pay full charges though as our optician is very clued up on KC.

Katherine had to go to the hospital to be officially diagnosed but after 6 months they discharged her because her optician was so good.

Regards
Deb
< replied-to message removed by QT >

[TJStim2299@aol.com]

the NHS should pay for all contact lenses for keratoconus but we have pay for any glasses we have.

Tim (UK)

[Kim Remmington]

I'm confused about getting solutions on prescription. I used to get them on the NHS but I thought that had all changed. Sue you say that you get your solutions and the saline on prescription, is that because you wear Sclerals or does it apply to all types of lenses. If anyone knows what I can get on prescrption, please let me know, as I seem to spend on fortune on stuff, as I'm piggy backing at the moment.

Thanks
Kim

[Sue Ingram]

Hi Kim, No its not just because I wear sclerals; I still get all the solutions for my rgp corneal lenses on the NHS and also get the Amidose saline and Miraflow cleaning solution for my sclerals on the NHS. I have also done piggy-backing in the past - do not get the soft lenses on the NHS, though.

I attend Moorfields Eye Hospital in London - where do you go? Hopefully, you will be able to get this sorted out; as we all know it can work out horrendously expensive not getting lenses/solutions on the NHS. Take care and let us know your progress as I am sure there are many others out there with the same problem. SUE

[Dave Hamblett]

"The paynes"
havent posted for a while but i noticed yours today, you may well find if your optician is v clued up on KC that he may work at one of the local hospitals on the nhs as well. This is the situation i had where my local optician is really good and now sees me at the hospital instead, i have to pay £40ish for rgp lenses every time i have new ones.
As for where you get referes i live near Coventry but got sent to leicester as my gp's knew they had a shorter waiting time, if you know where you want to go ask when you get refered and they may sort it for you
Best regards
Dave

[harpomatrix@yahoo.co.uk]

Hi

I'm just posting an update and am just wondering if anyone else who had acute hydrops went through what i'm going through now.

My left eye still looks odd. The corenea is still bulging and is still white. I still have no improvement in vision and am frightened of the thought of it taking months to heal and look a little normal. Just still lookin of hope of some progress but not finding any.

I thought the toughest thing to deal with would just be having vision in only one eye but this is not the only hard thing. The way I look as a result is really affecting me. I still cannot look anyone in the face, which is not good when someone is talking to you. Getting constant questions.

Feels like everyone is treating me, talking to me and acting differently around me. Not just strangers but friends too. I just want to get back to being me but can't with my eye like this.

Being December doesn't help at all either.

[David Stevens]

Hi All. Does anyone have any experience of KC and its restrictions (if any) to joining the Regular Police Service? As a KC sufferer my levels of vision are within the police requirements, but will; KC itself preclude entry?

[Sue Ingram]

Dear Anne-Marie (1106), sorry for the delay in answering your msg, its all been a bit manic recently. I don't think there is a set time between being diagnosed with KC and having to have a corneal graft - everyone seems to be totally individual; it depends how severe their KC becomes, whether they can still wear contact lenses and whether they can still manage their life without having a graft. So, I think the decision is down to the individual at the end of the day (after seeking professional advice, of course).

I was diagnosed with KC at 15 (probably had it for 2-3 yrs previously), am now 41 and still not had a graft in either eye. I have worn various lenses; rgp corneals for many many years, piggy-back sclerals with soft lenses underneath, sclerals with glasses. This is my latest option and is working very well for me. Sclerals are 100% more comfortable than corneals; I ended up with the same problem as you, that I could just not wear corneals because of the pain. Have you thought of sclerals? It would be worth investigating before going for the graft because if they work for you then they will keep you off the operating table.

If you need any more info on sclerals then email me on sue.ingram@virgin.net. The KC Group Website also has some info - http://www.keratoconus-group.org.uk if you have not already checked this out.

Good luck and let us know your progress - hope you find a solution for you. Take care. SUE

[Sue Ingram]

Dear Hazel (1147), Welcome to the site - its great to know that practitioners are becoming aware of the site and recommending it to their KC patients. Don't worry about wearing contact lenses - it is a bit strange to start with but once you get used to them you completely forget that you are even wearing them. There are many of us who have been wearing lenses for over 25 years, manage extremely well and find it does not stop us doing anything at all that we want to - even scuba diving on the Great Barrier Reef!

Good luck with your lenses and if you need any help or advice, then please post a message; there is alot of experience out there and I am sure someone will be able to support you. Take care. SUE