To all who have joined this forum recently

[Anne Klepacz]

Hi Leanne and welcome to the forum,
A 3 month wait is probably not that unusual, but by this stage I think I'd be checking with the hospital or with your GP if that's who referred you whether the referral has got lost in the system somewhere. (When I was waiting to hear from the hospital I'd been referred to for a diagnosis, I found after several months waiting that my GP had forgotten to send the letter!)
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet about keratoconus and the DVD of our 2009 conference which covered the options for the condition in more detail. It's always easier to ask questions at a hospital appointment if you have a bit of knowledge about the condition!
And you'll find lots of people here who'll be happy to answer any questions you have.
All the best
Anne

[Andrew MacLean]

Leanne

It can take a long time for the first appointment to come through, but if you feel you have waited an excessive period it would do no harm to telephone the clinic and ask where you stand.

Every good wish and welcome to the forum.

Andrew

[LalitaCJ]

Hello, my name is Laura,
I am glad to find this forum which I hope will be helpful. My sister suffers from vision problems; she has been diagnosed with keratoconus, corneal ectasia, and irregular astigmatism. Her diagnosis has been difficult and even differs from one professional to another. Over the years several factors may have made her vision worse. Currently she is 38 years old: at 22 she had radial keratotomy surgery after which her vision was much improved. However, after 6 years it began to decline significantly and quickly until she was told she had corneal ectasia and irregular astigmatism. She used rigid gas permeable lenses + soft Piggiback lenses but her eyes did not tolerate them making it impossible to wear them probably due to incorrect measurement. After that she used kerasoft 2 but her vision was blurry, again perhaps due to poor measurement. 4 months ago she started using Boston rigid gas permeable lenses and her vision improved but she is feeling uncomfortable like needles in the eye, and also has photophobia and watery, irritated eyes so she is not using them for long periods.
I live in England but my sister is in Bolivia. She has seen different doctors in various cities but has had little success due to lack of resources. She was told that it would be best to have a corneal transplant which terrifies her. I promised her to try to find someone who can help us and be able to read her topography which was measured with OCULUS – PENTACAM hoping someone could advise us about her options for being able to get accurate lenses for her problem. She is not able to deal with the daily pressure of life with 3 kids and a job with her poor vision. Please help!
Thank you.

[Andrew MacLean]

Hello and welcome to the forum.

I am not the person you are looking for, but I am sure that someone will be along in a moment who can offer the sort of advice and support you seek. I just wanted to say welcome and to say that I hope your sister and you both find the forum a resource to which you can contribute and from which you will benefit.

Andrew

[khatrimaf]

Hi

I AMA keratoconus patient from Pakistan. I would like to receive latest information on keratoconus as it is readily available for patients from the uk. Is there a way I can receive information through email?

Thanks.

Asif

My email I'd is kmasif@alameentrading.com

[Pacee21]

Hi nice to meet you all! I've put up a couple of posts but i thought i should add it here to be 'official' and all I put this is in a previous thread so forgive me for copy/paste. Heres a bit about me, my life and KC;

Ive been diagnosed quite late in life with KC for about 5 years now (29 currently). This moved quite rapidly from glasses to hard standard contacts via Specsavers, Before being referred to the Leicester Royal NHS to confirm my Kerataconus and then move onto RoseK2 lens in my left eye and a standard NHS type in my right.
I have been on these lenses now for over a year and been discharged from the consultant as they beleive my KC has stabilised (mostly due to the corneal scarring from what i understand) howver i still attend the LRI optometry to check my eyes.
The consultnat monitored my eyes with the topography over an 18 month period taking scans every 6 months but there has been no/little change.
I had recently been getting very photophobic with the lenses and very dry eyes requiring eye drops. Also i noticed headaches more regularly. However when mentioning this in June of this year they mention its just a phase and not really worth changing the fit or lens type.
As i was particularly frustrated with the NHS i decided to search externally for other potential lenses that would be better for me. Luckily i found a very good local contact specialist and after trialling KeraSoft IC - I am sadly unsuitable for these due to my corneal scarring I have settled on the So2Clear lenses which has given me amazing clarity - better than 20/20 in my left eye
I am waiting to pick my right eye up this week and tweak my left eye now its been in for a month (theres been a slight diopter shift as my cornea relaxes).
Things are looking up finally as it had got pretty depressing having constantly watery eyes random encounters with dust particles. Or my lens shifting and hiding under my eyelid more than once while driving. and the onset of photophobia causing me to wear sunglasses driving at all but total dark.

My current work is that of Project Engineer, the majority of my work includes detailed engineering drawings and site visits to building sites so you can imagine highly accruate detail drawings plus being outside in the cold, wind, rain and high dust environs with those lenses were causing more than a few problems. I did get very scared that my career would be ruined because of how KC is affecting my working life. This coupled with the prospect of buying a house and being able to keep up payments, led to a fair amount of stress.
Hopefully with the So2Clear lenses its looking like these problems will be drastically reduced. My left eye has takaen very well to the lens and i can have great vision for 14+ hours with little/no discomfort and the same looks true for my right eye too - the only pain now is the technique getting the lens in without an air bubble!

I am under no illusions that there is a miracle cure for going back to a normal life with this condition but hopefully this looks like a happy medium.

Dave

[Andrew MacLean]

Dave

It's good to meet you: welcome to the forum!

Every good wish

Andrew

[khatrimaf]

Please let me know on my previous post. Anyone, please.

Thanks

Asif

[Anne Klepacz]

Hi Asif,
Everything the KC Group does is done by unpaid volunteers doing things in their 'spare' time. So we simply do not have the financial or manpower resources send out our conference DVDs and newsletters worldwide. Plus much of the content of those is geared to what is available in the UK.
And quite honestly, you'll find lots of information about the latest developments on this forum, from all the posts that our forum members (many from outside the UK) make. I'm certainly constantly learning new things here!
There is also a KC organisation in the States www.nkcf.org
I believe they send out newsletters electronically to their members worldwide so that would be a good source of information.
And of course, with the incidence of KC being 4 times greater among people from the Asian subcontinent than among Caucasians, it's high time someone set up an equivalent organisation in Pakistan!
Of course we welcome people from outside the UK on this forum, but I hope you'll understand that there are limits to what we can do with our present resources.
Anne

[tremtastic]

Just wanted to introduce myself as a contact lens newbie after coping with KC and glasses for the past 10-ish years. Reading this board has been really useful and your lists put me in touch with a useful optician specialising in contact lenses.