UK Keratoconus Self-Help and Support Association

Local news today ran an item on Collegen Cross Linking (C3R), the item can be found under top stories (to the top right) of http://www.bbc.co.uk/midlandstoday/ or if it has moved, click on more top stories again at the top right of the page and look for Eye op 'Stops' Blindness.

Prof. Sunil Shah of the Midland Eye Unit, Solihul will be conducting clinical trilas on 50 NHS patients, at a guess these will be patients already under his care.

There was a slighy boo boo in that I asked if they could give the Support Group web address but my e-mail to them had my home number on too which is on my work e-mail

Hopefully all those who have called me tonight got the information they wanted regarding the group and what we are about

Regards

Gareth

Well done, Gareth! How did you get the number on screen so quickly? Did the BBC contact you earlier in the day?

The direct ink is here: http://www.bbc.co.uk/mediaselector/chec ... m=1&nbwm=1 and this should work hopefully for a few days!

I contacted them from work this morning, all my computers were off last night because I was due to go out when Anne called to tell me the BBC had been in touch. Thought there was no harm in reminding them to mention the support group, forgetting my work e-mail has all my contact numbers with the best time fo day to get me, so guess they went with the home one because the time on that coincided with the news item would be run and when most people would be at home!

It has certainly generated interest in the group and C3R that I had to plug a new phone in because I drained the battery on two

Just been on the news again as the last item, so a cut down version.

It's good to hear that another NHS hospital is starting clinical trials of crosslinking. And if any of our UK forum users know of other hospitals starting trials, do pass that information on to us, so that we can keep our members abreast of developments.
Anne

hi all
i just wanted to ask a quick question, i am going to see dr suni shah this afternoon and i may recieve my official diagnosis of KC, if i do will i still getting a free trial that was mentioned?
my appointment was bought forward due to "unforseeable circumstances" could this possibly be due to the trials???
what do you think???

shamsa

How did you get on? Are you in the trials?

Andrew

Andrew

Well when i went yestertoday my diagnosis of KC was confirmed and i was then talked to by Dr.Sunil Shah who said it was likely my KC was to progress further as i got older, however i am eligible fo the new trials introduced in the west midlands but he has not yet confirmend patients for the trials and i am likely to find out if i am elgible overcoming the week (but it is likely i am). So i am now going to return to the clinic on thursday to try on RGP and getting a fitting for them and i will then be told more about the trials.

I hope i do get in but its just a matter of waiting!!!
i will post any updates as i get them

shamsa

Thank you for the up-date.

First of all, let me say how sorry I am that you have now received confirmation that you do, indeed, have Keratoconus. I know that this diagnosis, however much you had anticipated it, must still have come as a blow.

As you see clearly from the posts on the forum, however, Keratoconus is a degenerative condition that, while not curable, is still treatable. The CXL trial being undertaken in the West Midlands is just one of the new treatment options being explored and it takes its place alongside more traditional approaches; the prescription of contact lenses and (ultimately) the transplantation of donor corneas into the recipient eye.

Do keep us in touch with your progress, and so share your experiences and insights in the forum.

Yours aye

Andrew