Re: SURVEY - LETS DO IT!!!! PLEAS READ

[Guest guest]

Tracey

It seems like you have covered it all! Good work. The only other thing maybe

is " when were you diagnoised or how long have you had rosacea. " Also is it in

remission or how often do you flare up. Just a suggestion. Dont know if that

will help survey or not.

Bobbye

[Guest guest]

Tracey

It seems like you have covered it all! Good work. The only other thing maybe

is " when were you diagnoised or how long have you had rosacea. " Also is it in

remission or how often do you flare up. Just a suggestion. Dont know if that

will help survey or not.

Bobbye

[Guest guest]

Tracey

It seems like you have covered it all! Good work. The only other thing maybe

is " when were you diagnoised or how long have you had rosacea. " Also is it in

remission or how often do you flare up. Just a suggestion. Dont know if that

will help survey or not.

Bobbye

[Guest guest]

Tracey, how about adding the following:

Symptoms/type of ocular rosacea, for instance I have had iritis, a fairly

serious condition and I am wondering how many other rosacea folks have had

that. Others eye conditions to list are: blepharitis, corneal erosion,

episleritis, and of course dry, red and irritated eyes.

Since eye problems are one of the most serious problems associated with

rosacea and can on rare occasion cause loss of vision, I feel we should take

a look at the frequency and types that are occurring.

Thanks, Kate

[Guest guest]

Tracey, I am continuing to think on this and I believe it would be

interesting to ask about any other illness or chronic conditions, especially

immune problems including allergies, and also migraine headaches. And while

it wouldn't be too scientific perhaps we could slot ourselves temperament

wise, as in hyper or laid back etc.

And last but not least the latitude where we live and/or the city to screen

for amount of sun exposure. Kate

[Guest guest]

hi tracey.

this is no small undertaking and it's wonderful you have volunteered to do

it.

i have a few suggestions. first, i agree very much with the person who

suggested that there should be some input about derms. my experience with

them has varied widely, some are good, some are awful and know little about

rosacea, but of course you don't know that until you've been around the bend

a time or two.

somehow i would like to call attention to the fact that rosacea is painful,

it is not just a cosmetic condition. the medical world needs a shift in

thinking about the condition. we need insurance coverage for treatment just

the same as any other disease, how else will we ever get it, unless they

finally understand we aren't just talking zits. when my rosacea got bad, was

very painful. it hurt like hell. the drs i saw insisted that pain had nothing

to do with rosacea, though you could just look at my face and see it was

obvious. they kept trying to give me antidepressants. there is a school of

medical thought that when someone complains about painful skin that there is

something psychological going on. finally i saw good drs and i found this

group where there were others whose faces hurt when they flared. then i knew

i wasn't crazy.

good luck to you, and thanks again,

cenia

also, information about lasering might be helpful. many of us have had laser,

not photoderm, with varying levels of success.

finally, i was thing about the progression of rosacea, perhaps some history

as far as when and if the rosacea got worse, and were there any warning signs

to indicate it was on the way to getting worse.

[Guest guest]

,

Maybe you could also ask whether people perspire heavily or lightly, since

it makes a difference as to how well heat dissipates. In my own case, I get

bright red long before I even begin to perspire and I'm sure that's a

factor.