New multilingual forum...

[Rebecca Petris]

Hi all,

This new forum is dedicated (though not restricted) to:

- Members of the nonprofit patients' association "Keratos", based in France and Portugal, which is - among other things - engaged in researching treatments for ocular surface diseases; and

- European dry eye patients

I'm hoping this will provide a more efficient way for European patients to identify each other online for mutual support and information sharing. Available treatments, drugs and devices, as well as care standards, vary a great deal from country to country so - as we've seen in our other forums periodically - for newer patients it can be very helpful to connect with patients who have experience with finding the best resources regionally.

Furthermore, for those of you trying to keep a close eye on more advanced treatment developments and longterm research areas, Keratos is a wonderful resource as they are actively keeping up with treatment & drug research in Europe. They are also a lot more technically oriented than we are (or than I am, rather... yours truly hardly knows a nucleotide from a newt), which is great.

Finally, like ourselves, Keratos is very interested in promoting greater public awareness and ways to "encourage" more constructive involvement from the industry (which could mean anything from increased research in dry eye treatments to reducing the widespread use of harmful preservatives in topical ophthalmic drugs and solutions).

So, we have lots in common and I look forward to some wonderful cross-pond sharing of information and ideas!

Feel free to offer suggestions about this forum... happy to consider any structures that would make it more helpful, such as subforums by language or country, etc. For the moment, feel free to get discussions going in your native language, though as a courtesy to others we suggest having only one language per thread!

[sazy123]

This is a great idea, might encourage more people in europe to post experiances more regulary. There is not much information on this keratos website about dry eye in english. Do you have any information about what they are researching and awareness strategies? or how do you find out what is under research etc.

thanks

[Cindy]

by Rebecca: So, we have lots in common and I look forward to some wonderful cross-pond sharing of information and ideas!

We sure do have lots in common! I think this is a great idea!!

[kakinda]

Volunteers and translators welcomed.

Hello,

On behalf on Keratos I would like to answer sazy123's question on our main area of research interest, which is:
- Secretagogues
- Mucomimetics (mucin), lipid replacements
- Dry-eye hormonal therapy
- Nucleotides and dinucleotides
- growth factors (corneal re-innervation) and other wound healing substances and therapies
- dry eye-related anti-inflammatory and immunosuppressive/immunomodulating therapy
- stem cells, amniotic membrane and autologous serum-based therapies
- therapy for meibomitis, rosacea and blepharitis
- and eventually really innovative non-preserved eye-drops for dry eyes and allergies…


As you said there isn't much in English on our website, simply because I haven't had the time to translate what I have.

So translators and volunteers welcomed welcomed!!!!

If you consider that I have been working on 3 or 4 languages, (+ Portuguese and Spanish), you can easily understand why.
But I'm working on that.
However, this also means that I only have a small percentage on what we researched on the website even in French.

I have translated some pages lately which need to be proof-read by a real anglophone ...would someone like to give it a try?

Would someone like to work on small summaries in English based on very interesting articles I have collected over the last 4 years? This would certainly help us.

Sorry that I can't do more, but with a little help we could speed things up ... and have a more complete English version of the site soon.

Anyway, if you have questions on the situation in France and Portugal, i can certainly try to answer your query.

As for strategy, maybe we can discuss this later on... but breefly at the national level (France particularly) it means contacting laboratories, dealing with advocacy issues related to reimbursement of dry eye medication, dry eye related disabilities, questionning docs, etc, etc... informing docs about new therapeis such as scleral lenses, cyclosporine, informing patiens -and unfortunately sometimes docs and labs about the consequences of preservatives such as benzalkonium, etc...
so too many things to talk about. Did you have a precise question?

Take care (we are all very much aware of the meaning of constant care!)

Kakinda (president and webmaster of Keratos)

[sazy123]

Hi I have left a message with my email on the other thread (news).


Thanks again for that information, I would be willing to proof read what you have already translated in English, I will be as precise as possible.

Would someone like to work on small summaries in English based on very interesting articles I have collected over the last 4 years? This would certainly help us.

What would this entail? Proof reading?

Do you know what the incidence of dry eye is in europe, is it simular to the states? It just seems to me the sates have a higher incidence than any where else.

[Rebecca Petris]

It just seems to me the sates have a higher incidence than any where else.

Naw, we're just fussier

[kakinda]

dr eye prevalence

Hi,
to my knowledge there isn't any comprehensive study on the prevalence of dry eye in Europe. Smaller studies (including some at the national level) have shown that this is a widespread syndrome.... particularly in our "modern and civilised" world (i.e. pollution, which exacerbates the prevalence of allergies, lasik and other refractive op., air contioner, heating equipment, staring at computer, medication side-effects, benzalkonium in eye drops, etc) as "evolution" is done without common sense.

The prevalence of this syndrome is therefore higher in the US, Canada, Western Europe and Japan... guess why!

This only indicates that the more you look into it the more you find it and the that our eyes have some problems coping with our lack of common sense... staring at screens all day in dry and polluted atmospheres!

If I find those studies again I'll send it to you but they're all very limited. There are some studies on the impact on quality of life too... which another interesting topic.

But it's clear that we are still in the prehistoric phase of dry eye care...this issue is understudied... and that dry eye is probably a misnomer because it seems that the prevalence of MGD in dry eye cases is much higher thant most docs think... so it's rather a matter of quality (which is less objectively measured than plain dry eye)...
so it seems to me that Murube (a famous Spanish opthal.) is right when stating we should call it lachyrmal dysfunction.

à bientôt,
Kakinda

[Brula]

Here is a link for Keratos page translated from French to English with google language tool. Try it, it's not that bad

http://translate.google.com/translat...language_tools

[kakinda]

Hi Brula,
Well I believe you're being very kind to google's translator. I can hardly understand some sentences... which souldn't happen because I've written most of the text.
But yes, if you want to have a very rough idea of what's written you can try it... even so, your French may not be perfect but it may still be better to have a look at it yourself.

It was funny to see how these translators machines work (well I've tried it before). For instance in French i wrote BUT (which stands for Break up time in our dry eye language... or should I say lachrymal dysfunction - sorry I'm used to the British-english writting- and in English... although "temps de rupture du film lacrymal" exists we use BUT as it is more convenient. Anyway, since BUT also means goal in French, don't be surprised to see "bad goals in one's eye" in that text. Too many inversions as well... French and English don't use the same logical sequence in words. So don't wonder why since Guillaume (William) the Conqueror crossed the Channel (la Manche) both countries are not always on the same wavelength!


I've said it before but ... French into english translators are welcomed. Keratos doubled its members lately but still no volunteers to help us out.

We need to finish the translation into Portuguese first and then I'll work on the English text (proof-readers will be welcomed then) .. let's say in August?

Take care,
kakinda

[Rebecca Petris]

I'd love to help. Translation is a really fun art/science. OT, in one of my former lives I managed specialized translation teams in Greece. My first project was translating all the documentation for the new brewery equipment in the Amstel-Heineken brewery near Thessaloniki into Greek. It had unfortunately previously been translated into beautifully incomprehensible English via an even worse Italian translation (I'm not sure what kind of beverage would have been produced, if any, if the directions had been followed) and that was what we had to work with. We had to assemble a team of mechanical engineers whose native language was German, Italian, English (to attempt to extract the original meaning from the awful English & Italian translations) and Greek (to make sure the equipment would work).

[kakinda]

HI Rebecca,
Thanks for your offer. So you never tasted the beer in the end?
Well, it's probably better that way... after so many translations you may end up having a totally different beverage.... a Greek beer? yet another interesting experience I never tried. So I guess you must be familar with both the charm and the complexity of Europe. Imagine the complexity of the work in Brussels and Strasbourg (the Parliament) even though English and French are the dominant languages.
I did some translator's work in a former life too... I guess all dry eye sufferers have had former lives, right?
Take good care,
Kakinda

[neil0502]

HI Rebecca,
Thanks for your offer. So you never tasted the beer in the end?

With every fiber in my being, I am trying to leave this one alone--reminding myself that it is what's known as a misplaced modifier and that it was written by a non-native English speaker (whose English seems, actually to be much better than mine, by the way )

Give me strength....

[kakinda]

Hi Neil,
On behalf of Keratos, you are hereby formally invited to check all misplaced modifiers, more generally grammar and spelling, in sum, proof-read all our texts in English...
really don't refrain yourself! Actually eveyone's invited to do so!

Should you read other European languages, you may note the frequent use of implicit subjects which clearly further causes "misplaced modifiers". So if you do read my website in English, don't be afraid to use logic to put things in the right order.

When are you crossing the Atlantic?

Take care,
Kakinda

[neil0502]

Hi, Kakinda.

We leave in 5 weeks. Much to do before then, since we are letting our apartment go.

I hope you knew, by the way (and I think you did) that my joke about the misplaced modifier was just that--a joke.

I speak a *little* German, a *little* French, and somewhat conversational Spanish, but ... I am always so impressed by the linguistic abilities of Europeans (or the Moroccans in Tangiers!), so ... I would never sincerely make fun of somebody else's foreign language skills

I heard from Dr. Baudouin this morning, by the way. I asked him about that "Iodide Iontophoresis" treatment in the Spa in Germany (I will also post this there).

He believes there were significant limitations to the particular study, but that the concept of iontophoresis is sound, safe, and effective, and sees no reason why--if we choose to visit that part of Germany--I shouldn't try the therapy.

... or just get a massage

All the best,
Neil

[kakinda]

Hello,

don't you worry Neil... however my invitation still stands as far as the website/proof-reading in August is concerned.

I saw one reference to that treatment, not in Germany but rather in Austria, Graz (Styria to be precise). Pub med i believe. Don't know much about it though

Sounds like you're about to write the european touristic guide for dry eye sufferers...
I may have some suggestions here and there: get an AMT transplantion in Rouen, NGF in Rome Italy, salivary gland transplantation in Brussels, sclerals lenses in France, the Netherlands or near London, autologous serum in Paris or Barcelona ... and your eyes will feel as good as new...I guess... Im sure I'm sure forgetting something.

que te vaya bien,
Kakinda