UK Keratoconus Self-Help and Support Association

Stumbled across this on the web.
Don't know if this really works, but its nice to hope. Felt good reading it and I thought I would share this with other if it helped them feel better.
Personally I don't believe that KC can ever be undone
http://healingkeratoconus.tripod.com/

Hi sarkac

Thanks for such an interesting link !

it mentioned several things I’d been meaning to bring up for a while, but wasn’t sure how to lead into them. I must confess I didn’t have the courage to read through the “full” version, but the key points seemed to capture it all. The take-away for me was the emphasis on a “holistic” approach. Too often I think we end up – in terms of our treatment – as being “salami sliced”. By which I mean, we’ll see an optometrist for the lenses, a ophthalmologist for the management of the disease and surgical options, perhaps a GP or pharmacist for allergies and maybe left to largely our own devices for cleaning solutions and wetting drops. Each actor looks at their own small part, but no-one ever looks at the whole.

But nutrition, exercise, a sensible sleep pattern and managing stress are not unimportant tools and techniques in helping us to live successfully with Keratoconus. When was the last time anyone heard about those from the people we see ? Perhaps never, because it isn’t their role to do that. That’s the problem isn’t it – it’s no-ones role. So it gets forgotten about.

To which I would add, we often in our culture seem to regard our bodies as not unlike pieces of machinery. If they pack up in some way, off we trot to whoever we think can “fix” them, where we set out our complaints and expect them to do a bit of tinkering or replace some dodgy parts and then off we can go, back to how we were. I’ve come to think that it’s not quite as simple as that. Without getting too “mind body and spirit” on this, I don’t believe that is how it is supposed to be. I think we’re not here to demand that we should at all times be totally free physical ailments. While that would be very nice indeed, I’m not sure that’s a reasonable expectation.

While I am absolutely in agreement that we should do all we can to obtain the best outcomes we can in the treatment and management of our condition, I think we’re missing out on something important if we don’t try and learn what that journey is trying to teach us. What benefits – however well hidden they may seem to be at times ! – it is bringing to our lives.

Not at all easy of course when you’re fed up, aggravated and left feeling low – we’ve all been there I’m sure. But I find if I try to at least be willing to look for the gift in all the adversity, then just once in a while I find that I’ve learnt things I otherwise wouldn’t have, found hidden strengths I never knew I had or maybe got a helping hand from the last person I would have expected to receive it from...

The only thing I didn’t entirely agree with was the writer’s suggestion about fitting a flat fitted, aspheric RGP lens. Hmm... well, yes, a flat fitting lens is likely to be more comfortable. But it is also just a likely to be pressing harder on the cone and/or be less stable. The optometrist will as part of the fitting process go through a range a flat-to-steep designs. They’re probably best placed to assess what the ideal balance between the two variables is. The trade-off between comfort vs. long term eye health is just one of the compromises they have to try to achieve. Not sure how the optometrists we go to would react to us demanding “I want a flat one !” Still, it is probably a good discussion point to have with them. I wonder how many of us never even have a chat with the optometrist about why they’ve chosen this- or that- variable over another ? The more we know, the better, I’ve found, so no harm at all in asking the question.

And no, I too can't take seriously how even the most diligent attention to dietry, stress and sleep factors can reverse the progress of Keratoconus. "Slow the progress" -- a qualified "maybe". "Reverse" -- nope, not convinced ! Wish it could be that simple

Thanks again for the link sarkac

Cheers

Chris

*yawns loudly* not this again.

There was mass debate on a facebook page about this a while ago and I can recall debates on this forum itself too.

the author of the pages never once explains how the topographies used are for various patients!!!

This also just to me sounds likea hoax n farce as if it was that easy to prevent KC from progressing thru diet alone every optom in the world would be recommending us all to do it, there are also no peer review articles or journals relating to this ... which makes me dubious.

In short I think and beleive this to be a hoax

space_cadet , I do agree with you and longhoc that the regression in unlikely to be true , but some how the article did pep me up a bit ,not sure why hence I posted the same.
Sorry in case I re-posted something that's already been here

sarkac

No need to apologize; it is always worth while drawing articles to our attention. Sadly, claims of a 'cure' for KC, or a new technique that will arrest or reverse its progress have not really stood close examination. Still, that does not mean that there is no hope of progress in the future.

Keep posting links to any articles you think may be of interest.

All the best

Andrew

I don’t entirely buy that the blog linked to was a hoax – it was an awful lot of effort to go to for a wind up, nor was there any obvious scam or tricks to get you to buy something. Okay, there were a few Google ads, but you’re not going to make your fortune from a few click-throughs... am I opening up an old sore here ? Sounds like I am so I’ll stop there.

Actually, I think we could do with a thread where we own up to our more out-on-a-limb pet theories and practical steps we use to live with and manage our condition. Like the member who swore by cleaning scleral lenses with washing up liquid (was that you Anna ?? apologies if I'm misquoting !). Never let it be said I won’t take my own advice, so here for your information – and probable entertainment – in tribute to our suspected hoax blog I present my own Keratoconus Whack-Job Theory Confessional:

1) Ditch the bathroom hand towel. Yes, you know the one, that 5 year old+ BHS “three for £5” thing that lurks either over the side of the bath or on the radiator. The same one that you tell everyone you change and wash every day... mostly... okay, maybe every other day. Or every three days if you’ve not got a full load to do. Fine, every four days maximum but never a day more. And which everyone in the family wipes their more-or-less clean (~ish) hands on. That you then go on to use just before you start your lens care routine. For me, I refuse to go anywhere near one. I have a kitchen roll (white, not coloured/patterned) that I use to wipe my hands dry on rather than risk a shared towel. Obsessive ? Perhaps. But – fingers crossed – I’ve managed to avoid any sort of eye infection in nearly 20 years of lens wear (and I’m not that fastidious...) so I’m sticking to it. That said, it could just be the first step to ending up like that bloke who wouldn’t go out of his hotel suite in Vegas (can’t remember his name) because of the germs. There is in my defence a wee bit of justification in that one. I’ve not seen any studies, but I would have thought that unless they are washed daily they are going to be an ideal environment for all sorts of undesirable microbes. By “washed”, I mean at 60°+. Even that might only pasteurise them (although with the detergent, it would probably kill everything I suppose). Even then, it wouldn’t take long for them to become less than hygienic again. And as for that trend to "wash at 15° to save energy", don't even get me started...

2) Never sleep with an open window and install a room air conditioner with the best filtration you can get. Like a lot of things, prices have fallen quite dramatically in recent years so it's not especially extravagant. Again, there is some logic here – being able to get at least a part of the day without your eyes being assailed by allergens and pollution with optimum temperature and humidity seems to work wonders. Certainly, no matter how bad my eyes feel at the end of the day, I invariably wake up with them back to normal. Absolutely no scientific proof whatsoever of course. All I will say is that it works for me.

Not sure if anyone will be able to top those.

And I don’t necessarily think I’m alone in having the odd “interesting” approach. Firmly in the “you could not possibly make this up” category, when I had my graft, I was stunned and uncharacteristically left lost for words when before the operation, the surgeon (I still have to think about this as I wonder if I imagined the whole thing) took out a black marker pen and drew a big arrow above the eye to be grafted. I’ve attached photographic evidence -- I had to capture the whole surreal thing for posterity. While I was in some ways pleased – as I guessed it avoided any possibility of a mix up – I was at the same time slightly appalled... Was there a example or two that on occasions someone had done the wrong eye ??? “Oops, oh, bugger, we’ve done the wrong one...” You’d have thought that they’d just read the notes before wielding the knife... Compared to drawing a big black arrow on the patient’s forehead, my “no hand towel” rule seems positively innocuous by comparison.

Best wishes

Chris

no need to appologise, just makes me sad to read such articles as they give such hope till you analyse them n do futher investigation n conclude they are a hoax, the woman aledgedly behind the page put in a appearence when we were debating it on facebook, couldn'thandle the criticism n rapidly left which kinda makes the evidence speak for itself

Lea x

I really enjoyed the photo Chris made me chuckle,
I think it would be good to start a new thread on our own personal product uses and patterns of cleaning andrew mentioned his recently. (as an aside is there anyway of making the site more easy to navigate? ie with most recent posts on the first page)
I’m amazed at how in a individualistic way our condition is looked at as you mention by each specialist be it eye care lenses or allergies. I sometimes wonder if the medical chaps really understand our issues and frustrations, I feel that I’m constantly paying out money all the time for this or that. these current so clear serical lenses i have dont seem to fit are only giving 6 hours wear tops and have cost me £400. Sorry feel a bit fed up today as i cant seem to shift an eye infection.

Apologies for dragging this thread out of the depths but your photo make me chuckle Chris, an arrow!!

is this a joke?


In my home page, I mentioned that I improved one line on the eye chart after just one session of Meir Schneider’s Yoga for Eyes DVD. I later had someone write into me who was able to take a private lesson with Mr. Schneider. Following are the notes he sent me from the session:
1) Palming - 50 minutes a day, can spread it through out the day as 15-5-5-5-10. I looked up a definition for palming on wikipedia, and here is what I found:

Palming or cupping is one technique that advocates claim achieves relaxation of the mind and the eyes. Palming requires a person to gently cup the palms of the hands over the closed eyelids, and attempt to see "perfect black" in order to give the mind and the visual system as much rest as possible. Then the person sits for five to fifteen minutes (or as long he or she wants) breathing deeply and easily with good posture.

However, if you’ve never heard of palming, I suggest querying the net for more complete instructions.

2) While at work, try looking at a distance (through the window) at least 3 times a day for about 10 minutes each.

3) Cover the less advanced eye with a piece of paper (size of a normal credit card) and try to view with the more advanced eye. He says this is to tune the mind so it can start using the advanced eye too along with the good eye.

The vision improvement movement had its roots from William Bates. He was an opthalmologist in the early 20th century that wrote books and taught courses on how to improve your vision naturally. Some day, when I have more free time, I will read some of his books. I have also heard good things about Thomas Quackenbrush, who currently has a 520 page book, Relearning to See. Having not read these products, I can’t vouch for them. However, I will put them out for your consideration.