UK Keratoconus Self-Help and Support Association

hi my name is nerio im 19 and ive recently been told i have KC. about 3 years ago i started noticing i was losing my vision, and little by little my confidence and self esteem started shooting down. the main problem is communicating. i sometimes feel im not connected with myself. im not sure if KC is the reason. im going to see a doctor soon on what my options are. im just looking for some support and experience info with an operation and how u felt after.

nerio

Welcome to the forum.

I gather from what you say that you are waiting for an ophthalmology appointment. It this is so, your doctor will probably want to confirm the diagnosis and may refer you to a contact lens specialist, either in the hospital or on the high street.

Properly fitted contact lenses may well give you good sight and reverse the trend towards poor sight that you have noticed recently. Other options can then be considered, and it may be that these will eventually involve some sort of eye surgery.

Every good wish.

Andrew

Hi Nerio,
Just to add that if you'd like our information booklet about KC and the 2009 conference DVD which covered all the options in more detail, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
I'm sure lots of us here can relate to losing confidence when vision is poor. As Andrew says, hopefully contact lenses will give you good correction and will change your life back. You don't say whether you're working or a student - do have a look at the leaflets you can download from the home page of this site www.keratoconus-group.org.uk/sitev3/publications.html
All the best
Anne

Hi

I am 26 and was diagnosed 3 years ago. I have coped OK - not great - since this but recently this has gotten much worse and I find that my local NHS is no help in terms of providing guidance or assistance. I am on a waiting list for INTACS which has been 6 months now and lenses hurt me; I had a pair that were OK but when my prescription changed I got new ones that dont feel right; after repeated reattendances to the hospital optitians they told me that this is the best they can do. So I dont wear them, only glasses which do something but not much.

I have written to the Primary care trust and they also tell me to just wait. For a year I have felt more and more out of it as you describe; dizzy, but not quite dizzy, more disorientated all the time. It is making my life a misery. I have had an MRI in case there is something else but there is nothing.

I can totally understand how low you must feel - I dont think I can live as I am now for the rest of my life. I can only offer my own story to tell you that you are not alone. Hardly a feel good story but confirmation that you arent going mad!

Hi all

not a solution, just a few words to let you know you are not alone in your experiences or feelings. Keratoconus for many of us can be a very unpredictable and bumpy journey with many ups and downs and shocks/surprises.

Don't give up, be clear at your appointments and make sure your feelings and obstacles to day-to-day life are fully understood by those treating you. The one thing I am now starting to feel very strongly is the case is that if you present yourself as 'coping' and 'managing' thats what they believe and they treat you accordingly. Whilst I am not suggesting you should 'loose it' or 'freak out' at your appointment you need to be clear they understand. Maybe have some notes on a pad and take someone with you who can have a clear head as if you are like me it will likely all go 'in a whirl' and you will come out wondering why you didn't ask or tell them things and wondering if you had understood what they had told you.

Take care

Susan

Hi Nerio,

You may want to consider seeing a mental health professional if possible. What you describe feeling sounds a lot like depersonalization - which is not a (direct) symptom of KC.

All the best.