UK Keratoconus Self-Help and Support Association

Hi All

Just thought id introduce myself my name is Emma im 28 i have a wonderful hubby and beautiful little girl (1 1/2 yrs) and 2 large slobby boxer dogs.

My Story...... i was diagnosed with KC 10 yrs ago my sight went over a period of about 1yr yet i have always had very bad problems with conjunctivits since a baby (allergic to everything). When my sight started to go down hill i was only 17 and new something wasnt right but kept it to myself but as the yr went on i wasnt able to see my watch, clocks on the walls, road signs and i couldnt recognise my friends across the street etc etc (as you all know) i began to loose many friends as they thought i was snubbing them and then came the final straw....my mum got a new car and(1 wk old) and i went to put my car in the garage and i couldnt see that she had parked hers at an angle (she wasnt expecting me home) and i reversed......... onto it (ooops) it was at that point that i had to come clean.

1 month later i was stopped from working/driving and put on incapacity (long term) told i had KC very bad in both eyes BLAH BLAH BLAH im sure you all know the rest (small lenses, large lenses, soft lenes. hard lenses etc)

Well after many yrs of other health problems and much depression i am now due to have my 1st transplant this june its taken so long to get here because im high risk of infection due to another health problem my eyes are that damaged now that they need to do something.

hope i didnt go on to much and sorry for any spelling mistakes (another problem)

Take care all

with luv

Emma xxx

Emma,

Hello there and welcome to the forum! Great that you have found us but sorry that you have KC. It was good to read your story, it is always nice to get to know each other here so please don't worry about your reply!

I am 30 and was diagnosed at 14. I played around for a few years with lenses and didn't really start to take it seriously until I was 16. By then I had too much scarring in one eye so have only ever worn one lens. I had my bad eye grafted a few years ago and am getting a lens in a few weeks which is all very exciting!

I am sorry to read about all the allergies you have and hope that your graft goes well when the time comes. Have you got a date yet?

We are all very friendly here and always wanting to help and support each other. Have you joined the group as a member as you will get a lot of information and newsletters!

Take care!

Hi Emma,

and a very big welcome to the site.

I'm sorry to hear about your experiences with KC thus far. I really hope that your other health problem doesn't cause too much problem when it comes to your transplant.

You certainly didn't go on too much, it's good to have some background information. Please feel free to make yourself at home, they're a most helpful bunch and great at answering any questions you may have or just offering support.

You'll find a fair few here who have had a transplant, some in both eyes. Whereas others like you are just on the verge of having one.

It's thus a great place to share experiences and feelings.

hi emma
just to say a very big welcome to the site, and yes we are all very friendly on here cos we all have something very "special" in common that bonds us all together.
i am now 40 yrs young and was diagnosed at 22yrs ago when i was an even youger pup of 18
its good to know a bit about your history as you will find that we are all different with our experiences.
like yourself i am under mr brahma at MREH and am on the waiting list for a transplant in my left eye, personally i am very nervous about it as i feel that even though there is an awful lot of support on here , it is still an adventure that we will travel alone with, though this group is really an excellent crew and do everything they can to support in any way they can.
chrisk has very recently had a transplant and is doing wonderfully well, he is keeping a diary of his progress for us all and that information is well worth staying close to.
good luck in the future
mike

Hi emma

I am Andrew, and I am 57 ...

Glad to welcome you to the forum and to thank you for the valuable contributions you have already made. Keep it up!

All the best with the transplant. Like you I waited until I was blind before I agreed to a graft. I do not regret this decision, although I think it was more driven by fear than anything else. Had I known before what I know now, I'd probably have had my first graft earlier.

Andrew

Hi All

Thankyou for your kind words and making me feel so welcome to the site.

Sweet....my date is the 5th June 07 and i am very very scared.

Q. does anyone have Sjgrens syndrome or Lupus?

My reason for asking this is im going through tests at the moment as my GP/Rheumatologist think i have lupus (SLE) and i have been looking on the internet and i have read that sle and kerto-conjunctivitis/sjgrens can be connected.

please help

With luv

Emma xxx

Hey there!

I'm not trained in anything to do with Lupus and eye related conditions but I have heard that it can be connected to allergies and conjunctivitis but not exactly KC.

I'm sorry but I don't know anything else about it and don't personally know of anyone with this condition either. Hoping that your tests don't show this and that your graft goes well.

It is a little way away yet but please keep posting when you are worried as we will always be here to listen and offer some support! Hehe I was terrified of having my graft and even as a nurse seriously believed that I would never wake up again!! LOL!! That was sooooo silly as I know that people do, it was just so different to be a patient for once and having to listen to what we tell patients as nurses!! Hehe!

Take care hun.

Hi Sweet

With you being a nurse im sure you will of heard of necrotizing fasciitis....well ive just recovered from that its taken 1 1/2 yrs and i to am worried that i will get another infection and not survive.
I have waited so many years for my eyes to be corrected and because of whats happened i just dont know if i can go through with it, my hubby/family are so supportive but deep down i dont think they want me to have them done because they've come to close to losing me once before.

Oh i dont know what to do.

im upset/angry/scared mixed emotions

luv
Emma xxx

If you have recovered from necrotizing fasciitis then you are already ahead of the game.

I can understand why your family is reluctant to see you go through all this again, but I als know that NF is treatable, and probably avoidable if proper precautions are taken.

Tell your ophthalmologist that you have recovered from NF and tell hin that you are worried.

I am sure you already know a great deal about the condition, but here is a factsheet

NF factsheet

Andrew

Emma,

Gee that is a very serious bacterial infection which is called 'flesh eating' isn't it?!! Wow hun you are so lucky to have recovered so I can so understand how concerned you are right now.

I am sure that your graft will go well, the only problem I think you will have is the time it is going to take to recover and for your vision to improve. But you have been through a long illness already so I am sure that you will get there, though it is annoying that our treatment takes so long!!

Take care.