UK Keratoconus Self-Help and Support Association

I'm a newby to this forum (well actually any KC forum).
I found it by doing a search for KC (using its full name) and Roaccutane (more on that in a bit).

I live in Victoria, Australia (hope it's ok to join a UK based forum) and I have been livng with KC (officially) since 2000 (before that it was just a - you might have but we can't be sure.)

Since 2000, I have been using RGP lenses to correct my vision which is now L-6/120, R-6/60 uncorrected and L-6/7.5, R-6/9 corrected. and has been for the last 3 years (hopefully all has stopped getting worse). Before the RGP lenses, I wore glasses which started when I was 20 (now 35)

I get about 16 hours a day wear time, but have been known to wear them for 3-4 days straight due to my job.

Now to the Roaccutane bit. I used Roaccutane for 1 year straight (with blood tests every month) when I was 16, had a break for 1 year and was put back on them for 1 year (with no blood tests). Someone suggested it MAY be a cause of KC or have something to do with it so looked into it and here I am. I notice a few months back there is a thread on this subject.

Anyhow, nice to be here and hope to share and learn.

TTFN (winnie the pooh lovers will know)

Damo

Hi, and welcome to the group!

Damo

Welcome to the forum. I am afraid that the simple truth is that nobody knows what causes Keratoconus. It is, however, sometimes associated with atopic responses such as allergies.

While I am not saying that Roaccutane cannot ever be a cause or contributing factor to KC, it is equally likely that the Roaccutane was taken to control a symtom that has a common unknown cause with KC.

Anyhow, it is good to add another antipodean to our happy band. We come in all ages, shapes and from all parts of the world!

You are getting pretty good correction and wear time with your RGP lenses! Hope that continues for a long time!

Yours aye

Andrew

Damo,
Did you know that it's Winnie the Pooh's 80th anniversary this year? All the animals will be celebrating in Ashdown Forest!

We went there last year and played Pooh sticks at the very bridge used by Pooh and Christopher Robin!!!

I've been to Bendigo - great town!

Welcome Damien, Janet is right Bendigo is a great town. I live in Horsham and my Husbands works head office is at Epsom. We drive through Bendigo often when going to Canberra and Sydney.
I dont know anything anount Roaccutane causing KC, but I took tetracyclines as a teenager for acne, however my sister did not and she has KC as well, and my daughter has early signs of KC and she has not had much other than paracetomol and pennicillin in her life time. A fairly popular theory seems to be that different things trigger the KC in differennt people, but they will only be a trigger if you have already got some other predisposition. No one has nailed down a cause, their is a definite familial link in some cases. There is also a higher incidence of people with excema and asthma amongst kcers than the general public. So it could be genetic, an allergic reaction, a reaction to some sort of medication, eye rubbing. No one can say for sure. All they can say is that we have it.
You sound like you are having fantastic results with RGPs which is great. 3-4 days is amazing.
regards Prue

Isn't it a small world Prue, I get to Horsham about once a month (soon to be fortnightly) for work.

Believe me the 3-4 days of wear is not nice and rosie. I have to put wetting drops in every 1/2 hour when I'm awake and only sleep for about 3 hours at a time, but when needed due to my work situation, it can be done. I also need to take them out for a clean every day, sometimes twice if time permits

The Ausies are taking over, soon we'll have a seperate forum!