Quicktopic posts: Feb 2003

General forum for the UK Keratoconus and self-help group members.

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Mark

Postby Mark » Sat 01 Feb 2003 11:08 am

I am currently considering purchasing a car - I have not owned one since developing Keratoconus afew years back. I meet the minimum requirement to read a number plate at 65 feet. I am, however, unsure if I have to disclosure my(relatively mild) keratoconus when applying for car insurance - the forms do not explicitly request it. Does anyone have any views / advice?

harpomatrix@yahoo.co.uk

Postby harpomatrix@yahoo.co.uk » Sun 02 Feb 2003 1:42 pm

Hey

I've been off for a bit cause I've trying not to think about my eyes cause I've got loads of other stuff on my mind. I noticed how I haven't been lookin in the mirror for a while cause I'm still too scared to see how the hydrops are still there in my right eye. I know it sounds stupid. I was the same with when I was losin weight. I never used to weigh myself cause I was too scared. Kind of doin the same thing by not lookin in the morror.

It feels like no more improvement since last update. I can't see in the middle of my cornea just the same vision around the edges. I figured it was a sign of real improvement but its either slowed or stopped.

Its 10 weeks tomorrow since I got the hyrdrops. Still haven't been myself since it happened. Totally changed personality wise. Don't think I'm gonna be good dealin with keratoconus as life goes on.

People r still weird around me I can still tell but I can't blame them, just makes me feel worse though sometimes. Just want to look "normal" again. 10 weeks has felt like a lifetime.

In terms of Uni I start back 2morrow with a new semester. I hope my vision will be ok for lectures and seminars. When I got the hydrops 10 weeks ago it was at a time where uni was ending for the year so it meant that i hardly had lessons or had to face people much. From 2morrow I will have lessons and will be facing people.

In terms of driving I'm worried about how keratoconus affects me. I'm still not great with my contact lens in my left eye. Its ok for now with driving and stuff but things like how badly over the futture will i be affected. Driving is the only thing right now that takes my mind of anything. Its the only thing I look forward to. Things like what mark has just posted worry me to. If i have to get insurance it might mean mentioning keratoconus. I bet that means a higher rated.

Anyway just goes to show how much keratoconus affects me. I even had a good day at work today but writing about all these things which I put to the back of my mind has kind of brought me down. Oh Well! See ya guys later

John Smith

Postby John Smith » Sun 02 Feb 2003 7:39 pm

Hello Mark,

I'd certainly tell the insurance about your KC, and spell it for them. That way, if you do have an accident, they won't be able to withhold payment to you on the grounds of non-disclosure.
My insurance companies have all made a note, but never asked me what it is, they're often just non-thinking telesales reps anyway, and won't ask you any question that's not on their screen.

I notice that the new Driving Licence forms now ask if you have (or have had) any eye condition that affects both eyes. Has anyone put yes, and what do the DVLA do?

Regards,

John

Deborah

Postby Deborah » Wed 05 Feb 2003 7:12 pm

I work in a primary school and I had a chance conversation with a lady from the visially impaired unit from our local LEA today. After I had answered her questions relating to the children at my school I asked her if their unit covered KC. I explianed that my daughter was diagnosed with KC at 4 years old (she is now 11) and she was horrified that she hadn't been referred to their unit. They go to the schools to make sure that they are doing everything possible to provide the best care for them. My daughter had been sitting at the back of the class, next to a window, because as she wore glasses they thought she must be ok because at least she was seeing an optician ! I have repeatadly told her high school about her eye condition but they don't take much notice.

I have referred my daughter to the unit but her primary school should have done this !

Nessa

Postby Nessa » Wed 05 Feb 2003 8:37 pm

Hi,
I have tried to read some of the messages posted on the site and found them extreamly interesting, yet i didn't see any from the families of these people, or perhaps i just didn't read enough.
My husband was diagnosed with KC when he was 15 he is now almost 35 so has been suffering for almost 20 years. It wasn't untill this week that i saw the sign at moorfields about the websit and thought great. He has KC in both eyes, left eye has allways been the worst, he has just had his fourth corneal grapht done, (all on the same eye) about 4 motnhs ago now and this is the longest he has gone without it rejecting. It has been a long hard struggle (we have 3 children). This time round they have put him on some very strong medication he was on sterroids which bloated him out completely (he is off them now thank goodness,although he did have to go back on them for a week about a month ago as the cornea went into rejection for a while, but they managed to bring it back. He is also on an anti-rejection medication which has made him very ill at times, low emune system ect. They expect him to be on this medication for about 2 years (1 year minimum), but we are plodding along, waiting and watching incase the eye gets sore or starts turning red. I supose we half expect it to really.
My husband hasn't worked for about 15 years, and also suffers from Irritable Bowel syndrome and Psoriosis, Does anyone else have these problems also?
Any way i saw a couple of messages that asked if a person with KC could have a blue disabled badge for a car........My husband has one, i dont drive nor does he, but we are allowed to use it in other peoples cars, he also is registered as blind and gets the lower rate of disability living allowance and he also gets incapacity benefit..........if this information is any good to any of you then i am glad to have helped.
I hope you all dont mind a wife of a sufferer posting a message on here, but i would like you all to know that the families of KC sufferers also suffer in a way.....sometimes i find it extreamly hard, because my husband gets so depressed at times.....he has been put on anti-depresants which i have to admit have helped a great deal with his depresion and with the irritable bowel syndrome......which is some relief for all of the family.
We have our ups and downs, but we have never given up hope, so for any of you out there who feel like that, please do not give up.

PS..............Although we have been together for ten years, we recently got married about 4 months ago, a week before we got the phone call saying they had a donar cornea, thank goodness we decided not to go on a honey moon.
Nessa

Helen Newham

Postby Helen Newham » Thu 06 Feb 2003 4:45 am

Nessa,
I suffer with my bowels too , and am under Dermatology clinic for my psoriasis!!! I did not realise it was all connected. I have a graft in my left eye and now see better in that eye than my right!!I am 36 , and am worried as my 7yr old son, has started to rub his eye and cringes away from bright light, do I go to the doctor for a referral for him or just a local optician?
Love Helen
< replied-to message removed by QT >

Nessa

Postby Nessa » Thu 06 Feb 2003 8:26 am

Deleted by author 06-02-2003 06:35 PM

Nessa

Postby Nessa » Thu 06 Feb 2003 8:35 am

Helen
I just want to clarify that i am not saying the bowel and psoriosis problems are connected with KC, I'm no expert, but its interesting to find out that someone else who has KC also has these other problems too.
We have a son who is 6 and 2 daughters who are 8 and 13 (13 year old is from another relationship). I have been takeing them all to the opticians from the age of about 4 and i explained to the optician about thier fathers eye condition. He is very good and checks every time for any changes. My son has astigmatism (notsure if thats spelt right) in both eyes and has done since we had his eyes checked from the first time he went, he wears glasses for this and so far it hasn't got any worse. We dont know if this is connected to his fathers KC, because he also suffered from epilepsy when he was a baby and had meningacocal septicemea (meningitis) at 18 months old. I would sugest you take your son to see and opticain and explain about your KC to him/her and they should keep a close eye on him. My husband came with us the first time and the optician asked if he could have a look in my husbands eyes, he said he was very interested and it would help him when checking our childrens eyes, maybe you could sugest the same to your optician, but like i said i am no expert........smile.
We went to Moorfields yesterday for a check up on his grapht, at the moment everything looks ok. One good thing about the cyclosporin (ant-rejection) medication it has cleared up his psoriosis, but we have been told as soon as he stops that medication, the psoriosis will come back and he cant stay on that medication for ever because it can be dangerous to stay on it for too long (side affects ect). But fingers crossed and all that, four months and eye is looking ok, no vision, so he will probably have to wear a lens eventually. He wears a scleral lens sometimes in his right eye, but finds it hurts him after a while so reverts back to his corneal lens.
Nessa

Nessa

Postby Nessa » Thu 06 Feb 2003 8:56 am

What does < replied to message removed by QT > mean? Does it mean my message was removed?
Nessa

sarah marsh

Postby sarah marsh » Thu 06 Feb 2003 9:10 am

hello !
sorry i havent written a message for ages but still read all of messges posted.hope everyone is well.
for thise who dont know i have had a cornea transplant in august 2002,and i am doing well so far next seeing surgeon on the 22nd feb!
the reason for my message is i am hoping to do a car boot sale ( well a stall at my local market ) to raise money and awarenness on KC so if anyone is in my area (frome ,somerset ) i will put a date on the website and hope to see you there.
also i now work voluntry for SOMERSET ASSOCIATION FOR THE BLIND and recently went to a "sight " roadshow but nothing there was about KC so i am hoping to get some information and pass this one so people can see and read more about KC.
i have also been asked to produce some writing of KC and my experience of my transplant for their magazine and wondered if anyone would be interested in providing a short paragraph that i can get a few different experenices across of KC and of transplant !
my email address is starlight7723366@aol.com or sarahritamarsh@aol.com(might be easier to remember )
thank you all
love sarah


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