keratoconus- I have just been diagnosed today. Does anyone have any experience of this please?

[QueenBhannae]

Hi all,

I went for a eye checkup today and was told I have developed this.
It is a progressive degenerative eye disorder that affects vision due to thinning of the cornea.
I have of course googled it to death but wondered if any of you had any experience of this that you might share?
Thanks

I assume you have been referred?
A friend has this. She wears gas permeable contacts most of the time to give her pretty reasonable vision. I think her eyes have been fairly stable the past few years. She does get nhs vouchers towards the cost of her contacts as they are deemed a medical neccessity. So thats worth bearing in mind.

Thanks for replying BadKitten.
Yes, I have been referred, mainly to be able to get the voucher to help with costs.
Hopefully the hard lenses will work for me but he did warn me that this might not be the case.
Great to hear that your friends vision has stabilised.Very encouraging.Does she have it in both eyes?

my dad has had this for at least the last 10 years and he also gets NHS contacts.

He is also astigmatic so gets v fancy contacts to correct this. It is genetic and I have early symptoms of it so it is something you need to make others aware of.

Dad still drives etc so not much to worry about me thinks

HTH

She does have it both eyes. She has 3 boys and is very very active with canoeing and stuff. I think the boys are regularly screened too.

I hope you get the referral through quickly. Try not to worry to much, I know how hard it is with eyes.