Re: Why no rosacea publicity? Was: Re: Sex, etc. (Long and rambling)

[Guest guest]

I have a different complaint about coverage of rosacea in the popular press.

I do see mentions of it in magazines, I have seen at least two references

to rosacea in Men's Health in the past year. Sometimes the rosacea is

mentioned in health columns. What irks me is that the consulting

dermatologist will answer the question posed in a very chirpy, optimistic ,

and unrealistic fashion. The answer will be something like-- " It sounds like

you have rosacea. You should see a dermatologist. while there is no cure,

rosacea can be well managed with one of several topical medications,... "

I think this advice is way too cheerful. The sad truth is rosacea is a

devastating diagnosis, very few of us are going to ride off into the sunset

with our prescription for Metrogel and live happily ever after. This is an

ugly disease and most of us have to settle for less than the improvement

(i.e. going back to our pre-rosacea complexion) than we want.

If rosacea is so well managed these days, what is the story on Clinton? It

is not possible that he doesn't have access to the best physcians and the

most cutting edge treatments. His rosacea is clearly not well managed. His

nose has grown and blossomed since he has been in office (No, I'm not making

a Pinocchio joke).

Why no rosacea publicity? Was: Re: Sex, etc. (Long and

rambling)

> Reading this post made me wonder why I have never ever seen any

> program or " segment " on TV about rosacea nor have I read anything in

> popular magazines, newspapers, etc., about rosacea, except for Metro

> ads. I wonder why. Lee, you came across about your feelings and

> what it's like to have rosacea very well. I thought about forwarding

> your note to Oprah or some news services, but then realized that

> would be way out of line! That is the way your writing struck me,

> though.

> A lot of people think this condition is a " vanity " condition, but

> they don't understand the physical and emotional difficulties

> accompanying it.

>

> Patti

>

>

> > Hi Everyone,

> >

> > This is a toughy. A " Goody- Two Shoes " writing about sex. I wrote

> > privately to Sal in response to his post. He made a VERY good

> point. As

> > understandable as it was that so many of us wrote back privately

> due to

> > the subject matter, it would do us all a lot more good to be brave

> and

> > share to the group. (My words.)

> >

> > Having said that, I am taking a deep breath and flushing worse just

> to

> > type this!! I don't have much to add really, but as a person who is

> > separated, I can attest that this is a very difficult part of the

> > rosacea picture. Not life- threatening- sure, but life altering

> beyond

> > belief!!!!! Thank you, Sal. Maybe if more of us go " public " , there

> will

> > be some more research into all these triggers and what the

> commonalities

> > are in the intricate workings of the human body. Maybe the NRS

> could add

> > it to he list of tiggers and it could be more talked about. Then it

> > might be easier to deal with for ourselves, significant others,

> > physicians. Two years ago, one nurse practitioner, drawing my blood

> to

> > test my hormone levels for early menopause, was the only one to

> say, " If

> > you are hot and in severe burning pain, sex must be real difficult.

> How

> > are you and your husband dealing with this? " Not well.

> >

> > So much advertising, tv, life- revolves around sex. Here's a big

> > opportunity for some researchers to work on remedying a problem that

> > even affect us rosaceans in this manner. I was recently speaking

> with a

> > male friend of mine. I was saying that if we could find a solution

> for

> > hot flashes, then maybe we could help rosaceans. He commented that

> he

> > thought if men were having hot flashes through the ages that there

> would

> > be a cure already.

> >

> > When Dr. Nase asked us for quotes for his book, I did not include

> this

> > aspect of how rosacea affects my life.

> >

> > The trigger list is quite long. What do most if not all have in

> common?

> > Heat. Either heat/ friction generated on the outside or on the

> inside

> > of the body.

> > (Although varies for us indvidually)

> > Warm environment

> > cold/ wind - then going into warmer area

> > cuddling- body heat/ release of... (I think both aspects contribute)

> > warmth from exercise or simply bending

> > digestion process

> > thermal heat in oral cavity

> > spicy food

> > alcohol (that warms you on a cold night)

> > emotions that stimulate facial warmth (embarrassment, anger, stress,

> > crying, laughter, being startled, etc.)

> > talking

> > act of sleeping/waking/laying

> > friction with pillow or covers

> > sun/ artificial lighting/ computer screens/ appliances- electrical

> > sources

> > products that make face burn, tingle, irrtated

> > hot shower (either immediate or delayed)

> > anything that caues body to perceive it is hot and cause

> vasodilation

> > (even some meds, some medical conditions)

> >

> > Etc., etc. I'm willing to bring anything out in the open about

> myself

> > (it now seems) if it can help us. I'd like to kick some medical butt

> > into gear so we can benefit from strides now or soon.. I want us to

> be

> > able to live our lives without this added monster of a disease.

> Life is

> > tough enough- there are so many of us who will have to or already

> are or

> > have been dealing with the life-threatening kinds of illnesses.

> This non

> > threatening disease shouldn't be able to ruin our lives like this.

> >

> > I'm done rambling. Almost. I'm just saying that I'll put my red,

> swollen

> > face on a billboard if it would help us get attention and HELP. One

> > friend thinks I'm crazy b/c do I really want the people I went to

> school

> > with,etc. to see how badly my life has turned out? Oprah says, " So

> > What?, Who Cares? " what other people think. (I certainly do not care

> > what uncaring drs think anymore. The title Dr means nothing to me

> > anymore. It is the person underneath who earns respect and is or

> isn't

> > decent or caring that I see. Just like any other person. We avoid

> some

> > peope and try to surround ourselves with those individuals who are

> > beautiful on the inside.) I'm doing my best to feel " So What, Who

> > Cares? " what the not-so-nice or just insensitive people think too.

> As

> > long as we are good people, really, why do we care? (The

> movie, " Age of

> > Innocence " kind of shows where all the, " Well, it just isn't done "

> > mentality stems from.Who cares what has been thought of as

> acceptable or

> > productive standards if they aren't decent or fit into your own

> life?) I

> > know I'm a good person, so why should I be embarrassed that I'm not

> the

> > attractive person I once was and that my career as a typical

> teacher is

> > over b/c I can't go under lights, etc.. (I know this to be true,

> but it

> > is really hard to live with. I've come a long way, though. Sink or

> > swim.) I'm still the same person. I'm just more desperate to be

> able to

> > live my life w/o constant pain. I just want some of my life back.

> I'm

> > going to fight for it, even if it's from my 63 degree, unlit house.

> All

> > we can do is our best with what God gives us. Right? (This group

> > exemplifies doing the best with the internet.) Thanks for

> listening. It

> > always helps to have great friends like you.

> >

> > Love,

> > Lee

> >

> > ... " From the moment we're born until the fading light, and all the

> > seasons that turn in between, it's the love that you give in the

> hour

> > you live that's the measure of the life you lead- We're Here To

> Love!.. "

> > R.M.

>

>

>

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