Katie Piper - The Science of Seeing

[Susan Mason]

Hello all

I have just listened to the program and whilst I appreciate that it related to stem cell treatment to repair a cornea I heard that one lady had the treatment and then went on to have a cornea transplant and anti rejection drugs were mentioned. Katie Piper also seemed to indicate that she too is taking anti rejection drugs. Having had a graft myself on the 18th Jan I wondered under what circumstances or at what time are these drugs prescribed. The lady in the program that Katie went to see seemed to indicate it was a take for life type of medication.

Hoping somof you can educate me a little more here as it is the first time I have heard mention of these drugs (which my husband kindly informed me looked like big tablets)

Susan

[Pat Chinnery]

Hi

I watched the program last night and all the talk of rejection drugs was a bit of a suprise to me as well.The other thing was her visit to the States and the idea over there to grow a cornea with stem cells to prevent rejection.I have had a graft for nearly six years now and had one rejection episode about one year post op but it was nipped in the bud very quickly and no other problems since.

Pat

[Anne Klepacz]

As far as I know, anti rejection drugs in tablet form are used for people at high risk of rejection. That doesn't apply to the majority of people having a corneal transplant for KC. We're normally just prescribed anti rejection eye drops for 6 to 12 months.
But a fascinating programme and one that will hopefully make more people realise what a precious gift corneal donation is. Perhaps some of those who currently complete an organ donation form but tick the 'not eyes' box might think again. And perhaps we can look forward to the time when corneal donation will become unnecessary because we'll be able to grow our own replacement corneas!
Anne

[fatar760]

I felt there was a degree of unnecessary material in the program. Did she really need to fly to the states and talk to a religious woman about the ethics of it all? Fact is that the program needed 'bulking out' to last it's hour long slot, where realistically 45 or 30 minutes would have done. I, for one, would liked to have seen more about her progress following the surgery. I know from my own experience that there were a number of concerns I had following surgery, some of which were posted on this forum. The entire operation and subsequent visits to CFS lasted about 10 minutes though....

[Susan Mason]

Hi all

I too would have liked to have seen more in relation to her progress and recovery. Maybe that will be another program?

Susan

[caroline6505]

Hi

Firstly, I think Katie is one very brave lady - she's clearly been through such a lot. However, I had great hopes for the programme. I expected it to be informative and really delve into the depths, ethics, and possibilities of the use of donor tissue and stem cells, etc. Lots of things seemed to be in the wrong order, e.g. Katie had already made her mind up to go for surgery and the op was booked yet she was flying to the states to supposedly investigate things and looks at options. She clearly hadn't done her homework on medication, etc with such a short time to go before the op. I thought it really only skimmed the surface and completely lacked substance, which was a great shame. Since the programme was about the science of seeing, I was surprised that the op was only covered in the last 10 minutes and we were all left guessing right up until the last minute whether she could see or not (there were lots of visits to the surgeon, but she couldn't see). I was very surprised by Katie's attitude about driving – the fact that A) she was/is driving and B) the fact that she shouldn't be (she seemed delighted to show picture of the state of her car after she'd hit a lampost!). Programme seemed to concentrate on her thoughts/feelings (not irrelevant, but that's only a small part of it). Would like to have seen more about the surgery e.g. what was involved in detail, during the surgery in detail and the road to recovery and aftercare, etc.

Big let down I thought.

Caroline.

[dalbeath]

I think you are all being a bit harsh. The intended audience was not a highly informed group of kerataconus sufferers who have either a good knowledge of transplants or indeed first hand experience of them. Instead it was aimed at Jo Public. If the program made just one person sit up and think about the importance of donating their corneas then it has to be a positive thing.

She has had 110 operations, one very brave girl. For all you know she may read this forum and in my opinion does not deserve negative criticism but instead should be applauded for making this program.

[caroline6505]

Hi dalbeath

I don't think anyone disputes that Katie's a very brave lady. Totally get what you're saying about it being aimed at jo public, but in my view the advert or the title or the programme didn't proportionally match the actual programme content. The title infers it's scientific, but when one actually breaks down the content, I agree with fatar760, that there was a degree of unnecessary materials. I suspect that given most of us on the forum (hence the reason we visit) either have KC or know someone who has and therefore know more than most about the condition and similar, therefore granted our expectations may have been higher than jo publics. Any criticism, potentially constructive or otherwise, doesn't strike me as being aimed personally at Katie (she's inspirational).

[fatar760]

I think you are all being a bit harsh. The intended audience was not a highly informed group of kerataconus sufferers who have either a good knowledge of transplants or indeed first hand experience of them. Instead it was aimed at Jo Public. If the program made just one person sit up and think about the importance of donating their corneas then it has to be a positive thing.

She has had 110 operations, one very brave girl. For all you know she may read this forum and in my opinion does not deserve negative criticism but instead should be applauded for making this program.

Well, she went on a trip to the USA to look at the potential of someone creating her a cornea from scratch so that she didn't have to rely on a transplant from another person and anti-rejection drugs. I'm not sure a member of the public would feel inspired to donate whilst she's looking at those possibilities. And, let's bare in mind, that the reason for that trip was for a completely hypothetical situation that was, somewhat, irrelevant to what, I think, the show was supposed to be about.

It's certainly not a personal thing to be critical of a television documentary. In fact, I would question how much say she had in the editing and decision making of the documentary such is the way of these things.

I must say I find her incredibly brave and a testament to what is possible when life goes against us. That doesn't mean the producer or film editor deserve the same respect

[Susan Mason]

I think you are all being a bit harsh. The intended audience was not a highly informed group of kerataconus sufferers who have either a good knowledge of transplants or indeed first hand experience of them. Instead it was aimed at Jo Public. If the program made just one person sit up and think about the importance of donating their corneas then it has to be a positive thing.She has had 110 operations, one very brave girl. For all you know she may read this forum and in my opinion does not deserve negative criticism but instead should be applauded for making this program.

I do not believe I was harsh, my comments were merely questions for my own benefit and also my expression that I personally would have liked to have heard more about her progress and recovery.

I was very surprised by Katie's attitude about driving – the fact that A) she was/is driving and B) the fact that she shouldn't be (she seemed delighted to show picture of the state of her car after she'd hit a lampost!).

My understanding of the driving regulations is that with good sight in one eye and no field of vision problems (obviously other than those caused by not being able to see on one side, which means you move your head more) you are normally allowed to drive.

I do not dispute in any way that this lady has been very brave and is inspirational in so many ways. What I would say is that she does not seem to necessarily face the same day-to-day challenges many of us with KC do on a day-to-day basis. For me the program could have had more content for success and recovery, yes whilst it is very positive if it gets jo public to donate however, there is still a lot of discrimination out there that so many of us experience on a day-to-day basis which need to be removed.

Susan