It looks as though I may do a rosacea interview in Chicago

[IowaDavid]

Just got a call from my laser doctor's office. I guess WGN wants to do an interview with my doctor about rosacea and they asked me to come in and comment. I really have no idea what the deal is going to be...though the woman at the office said it was going to be informative in nature as I didn't want to make the trip out there for a fluff piece.

Anyway, so, if things go well, we might get some exposure. I'm going to bring the photos I posted of myself in the hospital and and so forth on disk in case they want to use them for a before/after sort of thing.

So, I don't know how they'll edit it or if I'll get to advocate at all within the time allowed on the edited piece, but any ideas? I'm assuming I'll have not much time to speak in the final piece as the interview is going on my laser doc's office. But, hey, maybe I'll get a good sound bite in or two.

They told me if they really like the interview I'll get to do Oprah while I'm in the city.... ;) :lol:

[DukeCity]

Iowa,
Who's your Doc? - and where is he located?? - Let us know if WGN is going to run the spot, so we can watch, thx.

[drnase]

Just got a call from my laser doctor's office. I guess WGN wants to do an interview with my doctor about rosacea and they asked me to come in and comment. I really have no idea what the deal is going to be...though the woman at the office said it was going to be informative in nature as I didn't want to make the trip out there for a fluff piece.

Anyway, so, if things go well, we might get some exposure. I'm going to bring the photos I posted of myself in the hospital and and so forth on disk in case they want to use them for a before/after sort of thing.

So, I don't know how they'll edit it or if I'll get to advocate at all within the time allowed on the edited piece, but any ideas? I'm assuming I'll have not much time to speak in the final piece as the interview is going on my laser doc's office. But, hey, maybe I'll get a good sound bite in or two.

They told me if they really like the interview I'll get to do Oprah while I'm in the city.... ;) :lol:



Iowa,

Thats great. May I give you one piece of advice. Please dont wear the same outfit that is in your Avatar for the interview. :shock:

[Bob Bear]

Thats fantastic news! Unfortunately, I problem wont get to see it for about 5 years - the Oprah's we get the in the UK are so old, Dr Phil still has hair (joke)!

[todmiller]

David,

You should bring hardcopies of your pictures, so show during the interview, in case they won't want to go through the "trouble" of opening them with a computer, editing, etc.

Good luck, and make our voiced heard!

[bethanne]

David,

My advice would be to make certain that
you emphasize the impact Rosacea has/had
on your daily life. That is the part that the
average person (or derm!) doesn't "get".

Also, TV producers love humanizing a story
in such a way. Obviously, there is no need
to dramatize because the truth is dramatic
enough in our case.

What is the Oprah connection? I thought
her production company worked independently
with her stable of producers. If you appeared on
Oprah that would be enormous for the cause!

Just my two cents after a couple of
decades in the business.

Good Luck!

Beth

[Margaret]

David
Don't forget to mention your interesting work investigating how Red Light
seems to work for you. Light therapy is used in the mainstream UK NHS for several types of skin problems. It is quite possible that it can help the symptoms of rosacea. If I recall correctly I think Dr. Nase's latest thinking does agree with this.
Regards
Margaret.

[Mermaid]

Hey David,

Good luck buddy and please feel free to use my before and after (work in progress really) shots in the photo section if you think it is appropriate. Please stress that they have not been touched up at all and in the after shot, I am wearing very little cover, if at all.

I think a good angle would be to also mention that this is not a skin disorder but a neuro vascular one and hence many of us have to deal with not only the aesthetic issue but the neuropathic burning problem also, which can inhibit a person's quality of life enormously. Every doctor I have ever seen has trivialised rosacea as a mere skin condition and as such they've glossed over or ignored the fact that rosacea can have deep psychological repercussions for many of us.

Anyway, good luck bro and I'm sure you'll do us proud!!

Mermaid

[IowaDavid]

Yeah, I'd like to try to get in that it's not a strict dermatological disease and involves quite a bit of pain. That and it IS NOT cured--not by a long shot. I'll try my bestest to get a few words in regarding our point of view and situation. We'll see.


Oh--Oprah said she'll send a limo to my doc's office building to shuttle me to her studio. :o

[IowaDavid]

I'm thinking of something along these lines, if I can get it in:

"The difficulty is that rosacea is not a cosmetic or dermatological disease.
It's a dermatological, neurological, and psychological disease all rolled into one.

My dermatologist isn't neccesarily trained to tell me why my hypothalamus doesn't like warm lecture rooms and that's why I can't get my graduate degree as during winter semester when the heat is on and I can't tolerate, for the facial pain, how my blood vessels and nerves react.

This disease put me in the Emergency Room. And my dermatologist gives me tetracycline."


I'd like to hear any comments. Please help me refine the statement--I'm guessing I'll only get about 30 seconds of speaking. :)

[Mermaid]

Hey David,

Not sure how to include this or if you think it is relevant but in my opinion, a large problem for us is that rosacea is of unknown etiology but requires the medical attention of a broad number of specialists of varying knowledge. This is where I think the problem lies. There is a great lack of communication between the different specialists, these being primary physicians, dermatologists, neurologists, thoracic specialists, vascular specialists, endocrinologists, psychologists, IPL specialists, plastic surgeons, opthalmologists and the list goes on.

I think it is the lack of interchange of information between these doctors, which leaves many of us feeling confused, angry, frustrated and hopeless.

Mermaid

[Blondie]

David this is terrific news! Mermaid is, as always, spot on! I would try to fit in the misery of ocular rosacea. Talk about the loss of quality of life-how many of us just sit inside and avoid going out. Emphasize that rosacea effects MILLIONS of people. Pressure must be brought to bear on medical schools and the insurance industry to start treating this as the PROGRESSIVE VASCULAR disease it is. Getting down from my soapbox now....and best of luck!

[IowaDavid]

I guess the segment is going to be aired tonight at 9 on WGN during their "Healthwatch"--or something like that--portion of the news.

God, I hope I didn't misspeak. I was talking pretty fast and off the top of my head. :lol: Anyway, hopefully it will turn out okay.

David

[RedHotCanuck]

What is WGN?

Are you able to get a copy of it and maybe have it available online?

[IowaDavid]

It's a Chicago television station. They have an hour of news at night (well, what passes for news). I was thinking of taping it (DVD player is broken), copying it to DVD, and uploading it. But I don't know if it will be worth it, depending on how they edited it, etc. We'll see.


David

[DukeCity]

Right in the middle of the Sox game! - I'll definetly take the time out to watch you, thanks for the heads up.

[IowaDavid]

:x

Terrible! "3 treatments and you're all better"! Unreal! I specifically TOLD them I'd had over 20 laser treatments. But I got lumped in with the other woman featured as an easy patient.

I'm writing WGN a letter about this one. I'm quite angry about this.

I suspected this would happen....


MAN. Might as well give out giftbags of Noritate and Tetracycline and say, "You're all better now!"

[DukeCity]

Good job David, you're a star!! -- You look so much better now than your 'before' photo, did they put any make-up on you for the interview?? - But they made it sound like an easy cure for rosacea, 3 treatments and you're done. If it was only so easy...

[IowaDavid]

No. No make-up. I'm REALLY ANGRY about that. Here's my comment to WGN:


Hi, I was interviewed about rosacea in Dr. xxxxx's office by your health reporter.

I understand the delimitations a television newscast has to impose on its segments. I was expecting this.

What I DO NOT appreciate is that your report claimed that "3 treatments" and you're all better--and then included me under this treatment protocol with the editing of my statements.

I EXPLICITLY TOLD the interviewer that I have had 20+ laser treatments--and that's ignoring the combination of other treatment modalities I've used..

Your station has done EXACTLY WHAT I TOOK THAT TRIP TO CHICAGO TO DISPEL: The myth that rosacea is easily treated and just a cosmetic problem.
Your editing and presentation of that piece presented untruths and used me as a piece in that untruth! I hope your staff is comfortable with this.

I just feel sick. Thank you for using me and wasting my time. That's very professional of you.

Your staff that I met were nice and quite understanding;
I only take issue with your co-opting of my story and presence to facilitate the perpetuation of a myth about this disease that continues to keep sufferers like myself social hermits, depressed, and suicidal.

Thank you for setting me and my fellow sufferers back, once again. I realize you are not a medical journal--that's not what I expected. I just didn't want to be used as living evidence of an on-going falsehood in the medical community.

Would you do a segment about "A few hits of chemo and your cancer's all gone?"

Great ethics, people.

I'm disgusted.

David Christian

[DukeCity]

Great letter David, and I can see why you're angry. Hopefully they'll do another follow up piece on rosacea and tell the whole truth, thanks for your effort.

[polster]

this sucks I didnt see this thread till 11pm central time. I live in Chicago and have been watching the world series all this time on fox. I missed WGN news @ 9pm.

I hope they replay the segment or post it on there website! :)

[Blondie]

Hi David, I saw you on WGN cable out here in San Diego. I totally agree with your opinion. It was over before it began! Sounded like a 15 second commercial for Genesis. You couldn't even SEE anything wrong with that woman's face! They should have shown my nose in full flush! I'm going to write to WGN and second your opinion. Grr. :evil:

You looked and sounded great, and I for one REALLY appreciate your effort. It was very brave to put your "before" photos on t.v.

Thanks for trying.

[marecki]

iowadavid , is that piece avaliable for download anyware ?

[IowaDavid]

It's not worth it, trust me. ;)

[marecki]

well , i was thinking i'll probably get angry and send them few kind words :) , but i guess there is still not enough of us to change anything :(