UK Keratoconus Self-Help and Support Association

Hello Peeps

I'm doing a little personal research into KC and related issues such as contact lens intolerance, conjunctivitis, dry eye, allergies and any link with IBD (colitis, Crohn's disease) which is an autoimmune disease process where the body attacks its own tissue.

I know it sounds rather off-the-wall, but there is a definite medically researched link between IBD and eye conditions such as conjunctivitis and uveitis which don't necessarily flare up at the same time as the IBD flare-ups. I'm interested to know whether others on this site with KC also have or have a history of IBD, and whether they have found any increase in allergies, eye irritation, inflammation and contact lens intolerance during, or around the time of IBD flare-ups.

I was diagnosed with KC five years ago (I also have chronic eczema and hay fever) and have had colitis in varying degrees for the past ten years, although it is only recently that medics have named it. I know there are different types of medication available to treat IBD-aside from the dreaded steroids-and it would be encouraging to know that, if they dampen down the immune system to calm the bowel tissue, then does it mean that it simuntaneously calms down other tissue, such as in the eyes...or is that wishful thinking. I'm sure there are side effects with these drugs but it would be interesting to here others' experiences.

Happy Hogmanay!


Lyndsey

Lyndsey

I have no history of IBD, but know a number of people who do. On your behalf I've been asking them about KC aand other eye problems.

The sample is relatively small so not at alolscientific. Sorry, I had hoped to give you some news that might have been a help.

Allthe best for 2006

Hi there,
Thanks for "asking around". I know IBD isn't something that many people are always happy to discuss openly. It's a delicate topic for many.
I'm quite happy for people to email me through this system if they'd rather not post a message on the board publicly.

Lyndsey

PS-That quote is from "Visiting Hour"...so which hospital corridors do your nostrils go "bobbing along"? I attend the RAH Paisley eye clinic and I notice you're from Port Glasgow...

hi, i have been diagnosed with KC since i was 14(39 now) and have suffered from colitis since i was 19. i use steriods, not taken orally

not saying my colitis is connected to my KC has i know many people with bowel problems that don't have KC; only thing i discovered when asking friends about their conditions is that 99% of them do either wear glasses or contact lenses for correcting vision

I've had KC for 14-15years but, no real allergies to talk about although a few years back I was getting hypersensitive eyes during the summer, red rimmed watering, the doctor told me pollen was adhering to my lenses more than usual so my eyes were having a harder time than normal dealing with it. I started to use protein removing tablets and that sorted it out - it was also pointed out that the material the lenses were made off was of a type that wasn't very good and particles of dust etc had a tendency to stick to it, so when the lenses were changed I haven't had that problem since and don't need to use the protein removers.

never heard of IBD so i musnt have it. However i have

Hey-Fever
Asthma
Exma
Pet
Dust
Nut
Orange
and SOME BREAD

allergies.

Hello Jay,

Not sure about the orange, nut or bread allergies, but the rest are often described as "atopic conditions", and the incidence of KC has certainly be shown to be linked to them.

It is likely that the KC you have you were born with, but it is triggered sometime in later life (often around puberty), and will then be active for a period - sometimes short, sometimes long) before stopping.

An early symptom of KC seems to be repeated eye-rubbing. This is also associated with allergies.

Lots of people try to stop children rubbing their eyes, when they ought to be asking, 'why is this child eye rubbing?' it may be a way of indicating early the first stages of the development of KC

Andrew

I've known several people with IBS, and some iwth KC, but not those with both (one of the people with IBS has been blind frombirth).
I do have:
hay fever
asthma
allergies to all sorts of things, most of which make the asthma worse.
"all sorts of things" includes cats (!), horses (!!), WD40, paint fumes, other chemical solvents, air freshener sprays, London air pollution.
Also insect bites, which tend to swell up horribly.
My sister gets eczema.
My dad's mum was crippled by and eventually died of rheumatoid arthritis.
All auto-immune conditions.
My mum's side of the family all are ordinarily short sighted; my mum is quite bit astigmatic. My mum and my sister both get migraine, which can be food triggered.
It has occurred to me to wonder whether the KC has emerged in me when the astigmatism genes on my mum's side of the family met auto-immune genes from my dad's side.
Anyone else have similar experiences, or had similar wonderings?
Rosemary

Rosemary

Yes. I have wondered about the combination of genetic influences in the general soup of my makeup. I keep watching to see if there is a report of research into the combined genetic inheritance of KC sufferers.

Most of the time researchers seem interested in tracing blood relationships between sufferers, rather than the genetic inheritance of each.

Andrew