What's in a name? Your votes please!

[dianat]

Oh, that's easy. Ocular in the Sky with Diamonds.

[Steve]

Laughing out loud

Ocular in the Sky with Diamonds indeed!

Having just been told "live with it" by my referred ophthamologist, twice, I think a name that inspires a bit more sympathy and mystery is definitely better. "Dry eye" sounds so wimpy. "So just wet it. Duh".

Also, the scary part of this disease for me are the ulcers and other damage to the ocular surface that form the long-term complications. Ocular Surface Disease makes that much clearer, with the "Dry Eye" just an initial warning...

Of course the potential to be confused with OCD could be a benefit as well as a drawback, as Diana points out...

[Adar]

"KCS, please, and hold the Visine"

I'm with Kitty: KCS sounds as awful as my eyes feel.

I am careful NOT to say the problem is DES, because people misunderstand and the difficulties multiply. ("Here, I have some Visine. It works great!") I have a lot of trouble with RCE, and that's what I tell folks who need/want an explanation. It's only a by-product, of course, but the word "erosion" usually gets a grimace and/or some understanding.

I've had the same problem with a different and unrelated issue, Auditory Processing Disorder. If I say that when I hear two noises at once, all I get is a sort of cole slaw of sound, people shrug and say, oh, I have that too (with a look that says, so what's the big deal?) I get it that they don't get it, so generally speaking I just say I have "a hearing problem."

In general, with both issues, I find that what I call it isn't as important as being able to articulate what I need in a given situation, and then, often, the less explanation, the better.

[kakinda]

Hi,
OSD sounds pretty good but it clearly involves many things beyond DE, including other surface conditions (for instance Dystrophies etc). So I'm sure that why docs are looking for another more specific term. But DE is clearly part of OSDiseases (plural).
KCS would still be a misnomer since it invokes dryness alone not quality, lids disorders, epithelial disorders...whether it sounds more awful (and therefore appropriate for our condition) is another issue. Being precise is also important.

It should be something that englobes: tearfilm, lids and glands, ocular surface (epithelium and conjonctiva) and the nerves making the whole unit function.

So let's see, even if we simplify this, dysfunctional tearfilm and ocular surface nerve unit! DTOSNU sounds pretty bad and awful.
We can do better than this, DOSTU (Dysfunctional Ocular Surface and Tearfilm Unit)
Dysfunctional Lachrymal Unit... DLU?
Anyone care to try these acronyms? We already sound like crazy people when we say we suffer from DE (you know the "3 drops a day" disease... ha ha ) let alone if we say "I suffer from DOSTU or DLU"
Anyway, for me DTS makes slightly more sense than just DES, if i had to pick among those.
Of the original DES only the Syndrome makes sense to me since it gathers many etiologies which have in commun one problem (a group of symptoms) that we are trying to define more accurately. However, syndrome by itself isn't self-explanatory so it doesn't offer us any added value.
And again, the argument concerning confusion is not valid since DES may also mean Data Encryption Standard (by IBM if my memory serves me well)...I guess we're not applying to the same type of funding.
Take care
K

[Alexandra]

hello
I like the name OSD, but what should it be then in other languages?
It wouldnt work. maybe there whould be a word that you can say in every language, so a latin name would be good. thats why I chose Keratoconjunctivitis Sicca. What I often do if people ask me what I have is that I dont say that I suffer from DES, I say that i have a bad "chronic binding striking inflammation". Is that how you call it in english?
That way, people are sorry for you :-) because almost everybody had this condition some day....

[YGB]

How about "dry driving me crazy eyes" or DDMCE. I'm not sure if this would translate well in other languages, but it would let others know how we feel. Of course, they would likely only hear the crazy part and assume that we are nuts and that's why we think we have a problem with our eyes and not the other way around .

[dcampbeld]

a rose by any other name

Hey Rebecca

I like your idea of letting the patients getting a say. While I am not a sufferer or a doctor I do have an interest in dry eye. As for my opinion on the correct name to use.

I actually agree with/prefer DTS as this covers all parts of the condition I believe. OSD, KSC and dry eye syndrome (DES) do not cover everything but DES is well recognised and the change could be harmful for funding etc but anyone involved in the field knows that DES is the same as KSC, OSD and DTS anway. So a slow progression from DES to DTS is the way it should go the same as the change from KSC to DES.

Darren

[sazy123]

Its gotta be Dysfunctional tear syndrome or Ocular surface disease. One of the two im not really fussed which. They both sound awful enough which gives credit to the actual desease. Dry eye is just a symptom of a disease, NOT a disease its self, which i believe creates a missconception amongst doctors that artifical tears will solve the problem. Like dry skin-cream. My eyes arent really dry anyway, they burn/sting/water and make 10-20 schimmers, so i believe I have no diagnosis becuase my eyes are not dry. Maybe there should be a seperate name given for the diagnosis of evaporative dry eye.

I think dry eye syndrome/ chonic dry eye is to close it will just end up as dry eye again which sounds so less bothersome than chronic dry eye.

For the long term it would be more bennificial if they changed the name. i.e When explained the risks of lasik people might think twice about going ahead if they were told they have 1-10% (whatever the % is) chance of contrating ocular surface disease!

[Rojzen]

"Adnexa Oculi Disease"

"Dry eye" is way too benign a phrase, and sends the message that our eyes bother us occasionally, and just a little. . .

"Ocular surface disease" is way too broad, and tends to connote damage to the cornea. . .

KCS is too specific, as many of us do not have dessicated or inflamed corneas, even after prolonged tear dysfunction. . .

"Tear dysfunction" is too benign to capture the severity of the impact of tear abnormalities. . .

I favor something like "Adnexa Oculi Disease/AOD," which would refer to all the adjunctive organs that support ocular surface health. According to my Dorland's medical dictionary, the phrase "adnexa oculi" seems to mean "adjunct organs of the eyes."

[kakinda]

As i said previously (above somewhere), It should be something that englobes: tearfilm, lids and glands, ocular surface (epithelium and conjonctiva) and the nerves making the whole unit function. It's somehow a summary of the Stern and al long definition. The best to date in my opinion.

So in way, your AOD does that...

Now, we just need to convince doctors to follow your advice...
and that's another story (so that why i said DTS sounds better than nothing... as a compromise to avoid the nothingness aspect... as in Dry Eye the 3 drops a day disease... so they tell you ).

Darren Campbeld, may I inquire on your interest in DE? do you study it?

[Jeff]

New suggestion

Well I had originally voted for "Dry Eye Syndrome" as I feel that sums it up for the layman, after all the doctors will probably create another name for it themselves. However after reading all of these explanations I have come up with a new suggestion for your approval, How about we call it
"WOW DO MY EYES HURT LIKE THEIR ON FIRE AND I CAN'T SEE REAL GOOD CAUSE THEIR KINDA BLURRY RIGHT NOW" diesease
Maybe that will get the message across.
Jeff