Hi from Sajeev

[Sajeev]

Happy new year everyone!!!.....My name is Sajeev, some
of you may have already heard of me. I live in London
England and have been as a KCer at the "sharp end" of
KC issues for many years......

......It is really nice to come on a KC forum which is
really "Cutting Edge", balanced and is advanced in
it's thinking!!!......I think you guys are doing a
great job!!!.....and please carry on your good work as
i am proud to have KC with you guys!!!

I would like to take this opportunity to Thank you
Norbert and Markus for all the very interesting
information you have supplied to me and also the help
and guidance you have given me as well.

Anyway....I wished I payed more attention in my German
class's at school:).....as if it was not for the
Google translator I would have been completely lost on
your web-site!!!. I did find your web-site very
refreshing to read and i am glad to call you guy's my
friends....

I would like to take this opportunity also, to wish
you guy's a Very Happy New Year and may all the
barriers we face, and also the obstacles
which are put in the way of us by others, as Kcers be
broken down one by one!!!

And we are winning!!!:)

Look after yourself's

P.S....Guy's and Girls on this forum.... feel free to join the discussions on the Quick Topic....

[Hans-J. Hirche]

Hi Sajeev,
it seems that you are a really "brave guy". I feel free to pick up your invitation for a discussion. - what else should i do - if London is calling

As you may know, theses site is in change. Some brave guys are having a lot of activities in this direction in the meantime - unfortunatly not me, but.... everybody is doing the best to help and support each other. As i understood it correct, it is in discussion to rebuild this site more and more international. When this is finsihed you won't need the Google-Transalter. But for that, better ask Andreas (site-Admin) or Markus.... He is involved in this matters.

Are you a Member of the "UK Self Help and Support Group"?. If yes, just for my personel interest, how is the businnes of T-shirt selling going on. Is this just a nice thing, or is the organisation able to earn money with that to do some reasonable things with the earnings?

Thats for now. Maybe you are able to pusuade some KCers of the UK to give Germany at the next time a few more points in the "great competition of the Grand Prix de Eurovision de la Chanson" (don't know the english expression) than in the past.....


see you....

[Markus]

Hello Sajeev!

Welcome here! Hope you'll have a good new year!
Ah..., don't expect too much in the next time concerning an international part of the main-site. I have not enough time to get the new-site-project on his way in a short time.
But it's no problem to start some posts in english, of course!

Did you read about our next forum-meeting in september 2005? Maybe Prof.Lombardi will join us there, too. But only if we will get enough interested people coming to this meeting.
We'll need about 100 people I think. And we want to try to get other Doctors for an intensive discussion. Maybe you or some of your english board-members will join us, too? With Ryanair it is not too expensive, I think...

Many Greetings,
MARKUS

[Sajeev]

Hi Markus and Hans....

I think your plans for the future are really good.....as for the uk kc web-site....I don't really get involved with them that much and i really don't know about the t-shirt thing or how it works....LOL....I sometimes post there but as a registered charity it is not really a pressure group with aims to meet for Kcers.....it does a good job as a charity though.....

However I have had some success in getting public responce from a Doctor (which i think is the only comment found on any kc support web-site), on mini-ark (which is on the Home page of the UK KC web-site.....(under the section.....A cure for Keratoconus???)....the responce from Mr Ken Pullum, I think was more thoughtful and intelligent to the DUMB responces given out by the CFK Doctors!?!?!?!....... (As Ken starts of his comment on mini-ark by saying......."I would not denigrate any mode of treatment out of hand"......Not to forget that ARK has been tried for KC in the uk, in the past, which Ken also say's in his comments (which was also confirmed to me by another doctor at Moorfiels Eye Hospital in London), which means that they would not of tried it if it was dangerous for the patient.....but like Ken goes on to say, that the Lombardi clinic must be using it in a modified way....Also I wish to infrom you that the chairman of the KC commitee told me that CFK has been very abusive to them...as well???......and so they are not only not only abuse mini-arkers and Kcers!!!

I think for a Doctors to walk away from the mainstream treatments for KC to varify mini-ark neutrally will be very hard for that Doctors to do, as this Doctor may have to stand alone to do so....in the mists of the over-whelming pre-judging which has gone on and adbuse which has gone on coming from America Doctors....But we will still try to find neutrality and independace if we can....

All that i know is that ARK was over taken by laser treatment.....however (as we all know) we can not have laser treatment for kc and so as a fairly rare illness we lost out.....from reading about ARK.....i know that it has the most data on it (over twenty years) for any eye sugery (as it was so widely used)...and that it was a very successful treatment....but with the advent of ther "push button" technology over taking more skilled surgery, ARK died out (BTW.....the National Health Service over here has stopped laser treatment as laser is now it is deemed by them as being potentialy harmful!!!.....So Ark may come back!!!)

Also I found out that ARK was tried for KC over a hundred years ago....check this link out....

http://www.emedicine.com/oph/topic669.htm

I know this is only about ARK....and not mini-ark but it give's us some more insight to the evolution of ARK to mini-ARK....(which is a more minor sugery than ARK it self....but it is a more skilled one !!!)

.....Anyway I hope to catch you all soon.....

Best of Luck

[Sajeev]

Hi All....Please see Prof. Lombardis reply on quick-topic about this....I was reminded that the last link was about RK....which is even better news...

Catch you all soon...

[Norbert S.]

For those who don't have it:
The quicktopic-link

http://www.quicktopic.com/28/H/AYWXdnXkTYTb

Best regards
Norbert

[Sajeev]

Well they forced the hosting company to close the quick topic forum.....more evidence how they treat kcers who want to free themselfs from kc with a free flow of information....

Well we have a new forum going, which is even better than the old one.....please visit us....and i really do think your kc-site is the best in the world!!!

Please visit us at http://www.kcfreedom.org

Catch you all soon.....

[Markus]

Hi Sajeev!

If you want a forum like this one, I can show you how to set it up.
Then you would have even more possibillities. for example differrent forums for different general themes.

But you need a provider that supports PHP and a database called MySQL.

I think this software is the best forum-Software available. And its free.

many greetings,
MARKUS

[Sajeev]

Hi Markus......Thanks for your very interesting information.....I am greatful to you!!!

And markus and all other german kcers who wish to post on http://www.kcfreedom.org you are free to do so, as everyone is Admin over there!!!......as no one person is right all the time and so the forum can point to the answers we are looking for.....

They who has tired to stop us don't know that....."they can't fool all of the people all of the time!!!"

It is clear to see there is many new treatments coming out of germany.....and in other places where progress should be made, there is not.....I think that goes to show that there is an interest group who want to keep things as they are for there own interests in other countries.....

But i hope people will follow the good example you guys have set!!!

Look after yourselfs....

[Sajeev]

Hi Everyone...

Just wanted to tell you guys that my corrected (glasses) vision has got alot better......I am not 100% sure why it has happened....but i just wanted to report this to you guys......I remember I asked if this was possible to every KC Doctor I came across...but they told me that it was not possible....but i can now tell you that they were WRONG!!!

I have alway thought positively about the possibllities of the regression of KC....I always did believe it was possible....

Prof. Lombardi has always told me not to wear my contact lenses due to the side-effects linked to them.....I think this is the biggest reason why my eye-sight has improved....and i would like to thank Prof. Lombardi for his advice about this....I am greatful to you....

Here are the numbers....

Vision before 24/11/03

Right 6/9-1
Left 6/18-2

Vision After 12/01/05

Right 6/9
Left 6/12+

So it can be seen that there is a maked difference in my Left eye and little improvement in my Right eye which has great vision anyway....

I was told by my optometerists that i will see more improvements as i get used to my new vision and also if things carry on improving like it has been that there is no reason why my sight can not get even better as it has already been seen to improve (for some reason)!!!....

Anyway i am just over the moon about this news as I have never heard of it happing before.....THANK YOU GOD!!!....lol...i think someone up-stairs likes me!!!

....And thank you for your very balanced forum....!!!

[Sajeev]

Hi Markus......Thanks for your very interesting information.....I am greatful to you!!!

And markus and all other german kcers who wish to post on http://www.kcfreedom.org you are free to do so, as everyone is Admin over there!!!......as no one person is right all the time and so the forum can point to the answers we are looking for.....

They who has tired to stop us don't know that....."they can't fool all of the people all of the time!!!"

It is clear to see there is many new treatments coming out of germany.....and in other places where progress should be made, there is not.....I think that goes to show that there are interest groups who want to keep things as they are for there own interests in other countries.....

But i hope people will follow the good example you guys have set!!!

Look after yourselfs....

[Sajeev]

Sorry....I don't know how the last post was duplicated (above) from a previous post I did....I was correcting some spelling mistakes and I must have done something wrong....Sorry again...

[Sajeev]

I posted this (below) on the kcfreedom.org forum....I'm copying it here for you guy's...

My PA Treatment Experience (Patho-genic Agent (PA) which causes Keratoconus)

I believed it was important to go to Rome for my KC and after the findings from tests to then to decide on the treatments available at the Lombardi eye Clinic in Rome.

I was examined by not one but by a handful of different Doctors on my first day at the clinic. Tests was made on equipment I have never seen at any hospital I have been to in the UK or overseas where traditional treatments had a strong base….It was clear to me that it was the culmination of collaboration from many countries which focused on actually treating keratoconus which I was lucky to glimpse.

Dr Lombardi told me of a treatment which he is also doing other than the mini-ark treatment. This involves growing epithelial cells on top of a kc cornea by a means of using just a film of cornea, this film flattens the central portion of a kc eye; which in turn a laser can be used to correct the cornea even further after the corneal cells have been grown on the film. The whole procedure is reversible. This is another option available for me to take at a convenient time for me so as to have enough time to converlesant. This is because any treatment I opt for will involve both eyes being treated which I found out from my visit is the best thing to do due to brain visual compensation which happens when bifocal vision accuracy optimising is needed. This happens when one eye is more effect with kc than the other.
This decision was taken at my visit as it was the best time and place to decide after conversing with Doctors committed to a conclusive international KC treatment.

My second visit to Prof. Lombardi’s clinic was like a dream for the PA treatment. Various tests using bioelectrical equipment plotting graphs and measurements on my whole body and organs where made. I discussed these tests and the results with the doctor performing the examination and I found them to be vital and clever tests to do, which the west have not done or have not even thought about doing; and I was totally well informed of what the tests was for and what the results showed.

From gathering all the results from the countless tests, a combination of factors was discovered as the reasons behind my keratoconus. Treatments was prescribed for me to take home with me after they had removed the PA.

The next day I noticed the difference straight away on the PA removal on my body. My skin…it felt more conditioned and silky….not that I noticed it was not before…but it was definitely more better than before and its been a week since my treatment and the results have not changed a week later. This difference was something which I noticed straight away…but my eye sight has got better as well….its not much but it is sharper day by day….however I was told improvements like this is something to be expected after the PA treatment had been done.

I wanted to wait longer so I could tell you guys after some time has lapsed …this is why I am posting this after a week after my PA treatment had been done.

All in all….the in side of the church at the Vatican and the PA treatment made my visit to Rome a very happy and fruitful experience.

Everyone at the Lombardi Eye Clinic....Thank You very much....for your dedication and time

[Sajeev]

Hi Everyone, Just to let you guys know that we now have a "Doctors Office" Section for questions you may have for any Doctors who come to http://www.kcfreedom.org

Please feel free to use it anytime you want....and Prof. Lombardi did say he will try to post there....hopfully other Doctors will follow...

Warmest Regards

Sajeev