Do you fit this description?

[jayuk]

Ali

Fair comment....can you start one? As Id be very interested to see what your thoughts are.....I probably shouldnt have said Sudden...but I think its fair to say that over the past 5 years + there appear to be higher cases of KC being presented than before.........and I find it odd why this would be?

Are we experiencing a change or an affect of diets \ living standards which are causing this? etc etc

J

[K Reading]

Isn't it normal to be just a little anxious when you can't see well enough to know you are not about to tread on a step that isn't there/a deep puddle/the dogs tail? But are we any more anxious than other people with sight problems?

K

[Matthew_]

Hmmm, Keratoconic personality?

I have a lot of difficulty with that. I can accept that keratconics experience difficulties in their lives that (along with a lot of other experiences) will shape behaviour and outlook but personality? That's a huge leap of thinking!
Its a bit of fun to consider it but personally I am having no truck with it!

[Louise Pembroke]

I'm with you Matthew, I'll have no truck with psychobabble.

James, I was labelled as psychotic once but I don't think my bent corneas drove me mad, I reckon the total lack of support when I was young probably did!

I saw an American Journal of Psychiatry paper try to link KC with Schizophrenia, but like all clinical papers on this subject it was a joke.

Andrew PD assessments are a known joke amongst medical and psychol students. Anyone doing one will come out with at least 1 PD!!

I dunno about KC affecting more middle class people, I'm working class.

I don't mind KC being associated with intelligence though!! Does this mean I can say I'm the thinking mans crumpet then?!

[Ali Akay]

matthew
I agree with you that one has to be careful about reaching conclusions about personality. The comments and observations I made only relate to patient's behaviour in a hospital eye clinic and it would be wrong to assume a link with patients' personality in general ie If a patient is seen as "demanding" with regards to his/her eyesight it doesnt necessarily mean he/she is a demanding person in general!

One reason perhaps for the idea of "KC personality" is that back in the 80s majority of patients attending hospital contact lens clinics were elderly patients who had cataract surgery and keratoconics were a relatively small, generally young population who stood out as they were more articulate. But that's all changed now as KC patients dominate contact lens clinics and they no longer stand out as a seperate group.Some are more demanding than others like all patient categories. There are some patients who show the traits I mentioned, but there are also patients who havent got KC who show those traits, and there are many keratoconics who are very laid back and happy go lucky.

So,perhaps there used to be a so called KC personality, but I dont think it's relevant anymore.

[Andrew MacLean]

So,perhaps there used to be a so called KC personality, but I dont think it's relevant anymore.

Well done, Ali. I think that the need to identify "personality types" comes out of an old obsession in pseudo science. Next came the hunt for the KC gene. Next will come ... who can tell what.

Louise is right to reject psychobabble. I think we should have a healthy scepticism about all pseudo scientific stuff.

Still as a joke, the idea of a keratoconic personality seems to have worked pretty well here!

Andrew

[james mckinlay]

YEAH IM WITH LOIUSE ON THIS ONE.

ITS LACK OF SUPPORT THAT WE RECIEVE.

ALSO KC EFFECTS OUR EYE SIGHT. OUR SIGHT HAS A HUGE IMPACT ON OUR FEELINGS AND PERSONALITY.

BUT IF WE NOTICE THINGS CHANGE FOR THE WORST THEN WE NEED TO HAVE THE COURAGE AND TRY AND TACKLE THE ISSUES.

MYSELF I HAVE HAD SO MUCH TO DEAL WITH OVER LAST YEAR AND I THINK ITS MORE FRUSTRATION OF BEING YOUNG AND NOT BEING ABLE TO DO THE SAME THINGS I USED TO DO WITH MY FRIENDS.

ALSO WE LOSE OUR SO CALLED FRIENDS IN TIME OF NEED, AND FIND OUT WHO IS REALLY A FRIEND.


ALSO WE ALL GET ANXIOUS OR SLIGHTLY PARANOID IN OUR LIFE THAT IS NORMALL.
BUT IT IS WHEN THIS TAKES CONTROL OF OUR LIFE THAT WE NEED TO SEEK HELP FOR IT.

THE GREAT THING ABOUT THE FORUM IS THAT THERE ARE SO MANY PEOPLE WITH THEIR OWN EXPERIENCES AND VIEWS.

WHEN WE USE THE FORUM IN THIS WAY IT JUST BACKS UP WHAT A VALUABLE SUPPORT NETWORK IT ACTUALLY IS.

TAKE CARE

JAMES

[Sweet]

I find that i get away with having this condition very well most of the time. It is annoying to get up in the morning and not see but then a lot of people without KC have this until they put their glasses on or lenses in!!

I just get frustrated when i can't get the help i need. For the last 16 years i have had some really lovely optoms who have listened and been patient and have given me some really good lenses that have helped me see really well! The main frustration is waiting for hospital appointments and having a bad eye day when i can't put lenses in!!

I don't think i am demanding with what i want in my treatment. I just want the full story and for those treating me to be honest with me. It is silly not to know what the problem is because then i have no idea how to help myself. When i was diagnosed at 14 i made my parents leave me alone so that i could see the consultant and optom myself. I didn't want them to talk about me and for me not to know what the problem was! I am not stupid and have a right to know what is wrong with me and what could be done to help. Later when i did my nurse training i understood that this is a patients informed choice.

If i take a long time in having lenses fitted it's because i need to make sure it is the right one. I could easily just turn up and let an optom decide for me, which incidently is what one is trying to do at the minute, but she is getting this lens back as i told her it wouldn't help. I think after so many years of wearing lenses i would know what is helping as this is my eye but i went along with her to be polite. i did voice what i thought though of it not helping really nicely but sadly she is the first optom i have met who didn't listen. Now i am back in the Moorfields system but i am getting a lens which i can't feel in! Though i am stuck with a long wait again with appointments for both eyes now and not just one!

Hopefully the whole KC personality will be put aside with professionals. As a nurse we have certain views about some patient types as well but everyone is different and there is never a set way of patient presentation!

Hehe this is a very interesting topic though which i have enjoyed reading!!

Sweet X x X

[brigid downing]

In the philosophy of education, certain ideas that have to do with the body and the mind have been called somatics.
"somatic awareness allows a person to glean wisdom from within". (Hanna, Thomas. 1986). This useage implies a truly integrated mind/body/spirit nature of humans.
One who is somatically orientated could therefore be considered to be one who adopts a holistic approach to health and general well being.
I can relate this to my personal experience of KC which seems very much to fluctiate in intensity and severity in response to many factors. I do consider that the problems KC causes/extentuates for me are both physical and emotional. I often return to the thought that KC is not life threatening but is Quality of life threatening
I would definitely say that for me KC is best coped with when I feel emotionally and spiritually strong as well (though not instead) of when my prescription is right and my lenses suit. I have also found that making a spiritual acceptance of the situation has also helped my hugely ~ though not cured or lessened my KC I do feel that inner healing/forgiveness/releasing anger has enabled me to be more resiliant..

[Libby]

When I was first diagnosed in 1982 my brother was going out with a girl who was training to be a nurse. She brought me a thick medical journal and drew my attention to the section KC. I have always remembered it said it affects people of high intelligence. Cant remember any of the other stuff only that comment - I wonder why lol.
As for the other descriptions - anxious - yes but I think that is because I have KC and the challenges it throw up
Paranoid - no, and as for somatically something or other - I dont know what that means either. So much for high intelligence
Libby