Taking sight for granted

[GarethB]

Pat,

You have pm; give me a call and I can go into better detail regarding my return to work plan plus some extra information learnt since then.

Regards

Gareth

[Susan Mason]

Hi Pat

Please check your PM's

best wishes

Susan

[Pat A]

Hi
Can I just say publicly a big thank you to everyone who contributes to this forum - I am so grateful for all the help and support I am receiving - don't know where I'd be without you!

I'm starting to get my fighting spirit back!

Pat

[Louise Berridge]

I had had perfect vision for 32 years and was diagnosed a few months ago. I also took my sight for granted as I was always told I would only ever need reading glasses after 45. I know continuously wonder if it'll be the last time I see various things properly. I need correction for 1 eye, but don't use it and just wear sunglasses all the time. The problem doesn't seem so bad then. However, I keep getting ribbed about wearing them when it's gloomy/dark. No-one understands what the problem is and I'm repeatedly asked how long it'll take to get better, which it won't and I find quite upsetting.
Does anyone know if KC can progress even in your 50s/60s or does it usually halt by then? I know everyone is different.

[james mckinlay]

yeah its so true we take sight for granted i am 25 and have had KC since i was 14 but i just took it in my stride.

i used to work as a carer with young kids and adults with disabilities.

i even learned sign language and how to guide blind and partially sighted i did all the training courses and that.

but now its turned on me

all i see from the left eye is light dark and shadows.

what a turnaround.

in the right eye its about 40% of what it should be.

and this is after grafts.

however sight is precious and i wish we could make people realise how precious sight is.

id love to be a speaker in schools and tell them all how important it is and even produce something to show people how sight lets us live our lives.

it is something i feel strong about and as soon as an eye test letter pops in the door i moan at my familly to go for it and dont stop untill they go.

take care

james

[Pat A]

Louise (B)
Well I'm now in my 50's and my KC seems to have progressed quite rapidly over the last 2 years - to the extent that it is now seriously affecting my ability to see anything clearly, and glasses don't help at all now. You may see from other posts that I have only recently been diagnosed too but Moorfields tell me I have obviously had it for many years, albeit mild enough to be managed (perhaps not very well in recent years) with glasses. So, as you say everyone is different it seems - we're an unpredictable bunch!

James
Your idea about talking to schools is brilliant! Have you thought about approaching your local school, via the Governors, to see if they would allow you to do something like that? If the school is any good they should welcome it, particularly for 6th formers, who usually have a weekly general studies session. I'm sure others on the forum would help put something together if you wanted to. I used to be a Governor at my local secondary school and we used to encourage outside speakers on a multitude of topics which would affect pupils after they left school as young adults.

Go for it!

Pat

[james mckinlay]

I MIGHT CONSIDER THAT PAT .

MY PROBLEM IS IM FULL OF IDEAS AND WEIRD WAYS OF CHANGING THE WORLD.

BUT LATELY I HAVE BECOME MORE MATURE IN THE WAY I SEE LIFE.

INSTEAD OF JUST HAVING A LAUGH ALL THE TIME AND NOT HAVING A CARE ABOUT MY HEALTH. I AM ACTUALLY TAKING A MORE SERIOUS APPROACH ONBOARD.

I WILL CONTINUE TO IMPROVE MY CONFIDENCE AND SELF ESTEEM AND IN A FEW MONTHS I WILL LOOK AT THE POSSIBILITY OF DOING THAT.

[Louise Berridge]

Hello Pat. Thanks for your response.
That's disappointing to hear. I was hoping it would ease by then. Much of the literature seems to say it usually stabilises as, like the skin, the cornea ages and toughens.

[GarethB]

It has been suggested one of the triggers is hormonal which is why so many are diagnosed in their teens. There have been several cases where women have been diagnosed or noticed KC worsening during pregnancy and immediatly after child birth.

Perhaps KC stabilises with age until hormones run riot again. Only a theory and nota good one!

[Louise Berridge]

I think you could be right Gareth. I didn't have any hormones until late twenties when things started to settle down. So that theory would tie in with me.