UK Keratoconus Self-Help and Support Association

Hi - my daughter (age 12) has keratoconus diagnosed last year and I am wondering if this is a good safe site for her to access to talk to other k sufferers.

My husband has K and had a graft in one eye 2 years ago which has been successful however Laura's view of K has obviously been coloured by his experiences and I thought it would be good for her to talk to others.

We visited our consultant yesrerday who talked to her about the "riboflavin" process for treating K and we would be interested to hear from anybody who has has or knows more about this.

Sue

there are a number of young people who use this site. By and large the standard of discourse is pretty well balanced, but sometimes the vocuabulary becomes a little technical.

John (our Moderator) does a good job keeping spammers away.

I understand how cautious parents of children have to be about the internet, but as most of us declare our ages (I'm 56) and our locations the danger of 'grooming' is probably not so serious.

I am not sure whether it is possible to block private messages, but all the rest of the content of the site is open for all to read. I guess this may also be a safety provision for younger members.

Thank you for taking the time and trouble to check us out. Your daughter will be encouraged that her mum cares enough to be cautious, and as to her KC she will know soon that she is not alone.

Yours aye

Andrew MacLean

John,

Keeps a check on all of us and has created a forum just for yourger people.

I think basic forum rules of never divulging details such as adress and phone number either on the forum or by pm/email is sensible precautions regardless of age.

There are many local support groups where familly members are welcome as they too can gain support on how to help their relatives or to help with their concerns too.