"A Day in the Life" Psoriasis Awareness Program Launched

[makeitgoaway]

Media Alert: "A Day in the Life" Psoriasis Awareness Program Launched



Model Finds a Day in the Life of Someone with Psoriasis is No Cat Walk

WHY: Up to 7.5 million... Number of Americans living with psoriasis .

NEW YORK, Sept. 12 ,2006--If your skin was covered with red, scaly lesions, would you wear shorts or cover them up with long pants? How would you feel if you jumped into a pool, and everyone else jumped out? Would it be easy for you to tell the person you're dating that you suffer from a chronic skin disease?

You may not know the answer until you spend a day in the life of someone with moderate to severe psoriasis .

"A Day in the Life"... An educational program designed to address the social stigma associated with the condition and encourage those living with psoriasis to visit a dermatologist and discuss treatment options . Psoriasis is a manageable condition that should not have to prevent anyone from living a full life .


WHAT: INTERVIEWS: Patient advocates who can share personal experience about living with psoriasis and taking control of the condition, and a dermatologist who can discuss the disease burden and help debunk misperceptions about psoriasis.

B-ROLL HYPERLINK: For visual concept ideas, view footage of a model posed as someone with moderate to severe psoriasis, demonstrating the challenges people might face when in public, by clicking on the following link:

mms://windowsmedia.onthescene.com/adayinthelife.wmv


For more information about psoriasis, visit www.psoriasisconnect.com <http://www.psoriasisconnect.com/> .


WHO: Patient Advocates: To illustrate the dramatic impact psoriasis can have by sharing their personal story.


Mark G. Lebwohl, MD, Professor and Chairman, Department of Dermatology, Mount Sinai School of Medicine; Chairman of the Medical Board of the National Psoriasis Foundation; Founding Editor of Psoriasis Forum and Medical Editor of the bulletin of the National Psoriasis Foundation, Psoriasis Advance .


Model (as seen in B-roll): To share experience living "A Day in the Life" of someone with psoriasis.


CONTACT: Kristin Jones, Porter Novelli, 212.601.8455 or kristin.jones@porternovelli.com kristin.jones@porternovelli.com> Joanna Rice, Porter Novelli, 949.218.7180 or joanna.rice@porternovelli.com joanna.rice@porternovelli.com>


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[alli]

Makeitgoaway,
While we have Mike as the Link Master, I think we're going to have to name you the King of Media Links. :D
Thanks for all the information !

[wildflowerAnn]

"Psoriasis is a manageable condition that should not have to prevent anyone from living a full life."

I didn't find that statement in the website, which is extensive. Is that a quote from Dr. Lebwohl?

Whoever wrote that needs to read these message boards. Many members with PA suffer with it progressing despite taking every possible medication there is and end up needing canes or wheelchairs, and requiring disability retirement.
Many members on this board have pustular psoriasis and are trying every known treatment without success in reaching remission, and they endure the side effects of the medications; some have had to use wheelchairs, and many have lost their employment.

Are all of these members seeing doctors who know nothing, and this physician has all of the answers?

Many members have posted how one medication works for a period of time and then fails, and they have to begin again with another treatment or stacking medications.

Whoever wrote this needs to read the posts of the PA'er's who get up at night in pain (the psoriasis skin sufferers do the same) even though they are taking every possible medication that their body can tolerate.

Whoever wrote that statement doesn't understand what living with psoriasis is like.

Ann

[ouchyk]

This lil clip is taking forever and a day to download on dial-up. :confused: But from friends who have seen it I guess its very eye opening.

I don't know who wrote the statement. Butttttt..........

I thank dr's like Mark Dr.Lebwohl who are champions in our disease, we are truly fortunate to have them advocating & researching for us, not to mention a super nice person, I met him in Washington DC at CHD.

The Medical Board promotes access to quality care by advocating for better clinical research tools, promoting medical education, identifying and promoting medical professionals who most effectively treat psoriasis and psoriatic arthritis, and assisting with the development of information relating to disease pathophysiology and disease management.

Mark Lebwohl, M.D., Chairman
Mount Sinai School of Medicine of New York University
New York, N.Y.

Oh and Steve, thanks so much for your continued educational and informative postings. :)

Karen

[wildflowerAnn]

The original post in this thread contains the sentence: "Psoriasis is a manageable condition that should not have to prevent anyone from living a full life.
I want to address this remark. If it is a true statement, then every member here should have their psoriasis or psoriatic arthritis managed so that they can work full time and do all of the things that they did before they had P or PA. They should have no pain; only see a physician once a year for a physical; have no depression or feelings of loss; and have clear skin or uninflammed joints. Why are we seeing threads about depression; or pain surveys; or questions about disability applications? Why do disability applications get approved, if this is true. Why isn't everyone in full remission? Why do people have to stack cyclo or mtx or prednisone on top of Remicade? Why do all the known P/PA drugs fail to completely control the disease and require rotations in treatments? If this is a cake walk, then why does NPF exist and why do we have this community message board?

How many members here feel that their disease has been managed that easily? Those who get control with diet changes or over-the-counter medications are very fortunate people.

Karen, I remember that you once posted that a hair salon threatened to call the police if you didn't leave. Is that a full, normal life?
How many of us have had our change put on the counter because people looked at us and were afraid they would "catch" something from us? Is that a full, normal life?
How many of us wear clothes other than what we would normally choose, even though we are using all available medications to manage this disease? Is that a full, normal life?
How many people could manage a 12 hour plane trip without lotions, or having PA and sitting in a tiny airplane seat?
Etc., etc., etc. That sentence is invalidating and offensive.

[mamaooch]

The original post in this thread contains the sentence: "Psoriasis is a manageable condition that should not have to prevent anyone from living a full life.
I want to address this remark. If it is a true statement, then every member here should have their psoriasis or psoriatic arthritis managed so that they can work full time and do all of the things that they did before they had P or PA. They should have no pain; only see a physician once a year for a physical; have no depression or feelings of loss; and have clear skin or uninflammed joints. Why are we seeing threads about depression; or pain surveys; or questions about disability applications? Why do disability applications get approved, if this is true. Why isn't everyone in full remission? Why do people have to stack cyclo or mtx or prednisone on top of Remicade? Why do all the known P/PA drugs fail to completely control the disease and require rotations in treatments? If this is a cake walk, then why does NPF exist and why do we have this community message board?

How many members here feel that their disease has been managed that easily? Those who get control with diet changes or over-the-counter medications are very fortunate people.

Karen, I remember that you once posted that a hair salon threatened to call the police if you didn't leave. Is that a full, normal life?
How many of us have had our change put on the counter because people looked at us and were afraid they would "catch" something from us? Is that a full, normal life?
How many of us wear clothes other than what we would normally choose, even though we are using all available medications to manage this disease? Is that a full, normal life?
How many people could manage a 12 hour plane trip without lotions, or having PA and sitting in a tiny airplane seat?
Etc., etc., etc. That sentence is invalidating and offensive.

Ann,
I agree with you. As you know from my posts I have severe PA and pppp, if I was able to live my full life, I would get up every morning for my morning run before work.
I still work full time teaching and I am also the tech person at my school. Everyday is a struggle, and it was so easy before the rib pain appeared (2 years ago). If I was living a full life I would not have to come home from work and take a nap every evening just to be able to have the energy to cook dinner.
I try so hard to not show my family the ugliness of what this disease has done to me. It breaks my heart that I am trapped in a body that I don't recognize or want to see. It is not that I am vain far from it, but my ribs are disfigured and I can't do all the physical things I once enjoyed very much such as running and taking weight lifting classes at the Y. I still work out, but I have had to modify and change what I can do, which is now cycling class and water excercise. I am thankful that I can still do those things. I am a vegetarian (been one for 8 years now) and I eat right, and things are the same. I can only go forward not back, but I actually feel like a part of me is missing.

Sorry to rant, very bad day.
Cindy

[Stillworking]

I don't think that you are ranting at all. I agree with you. I would rather be able to dance a six shooter on weekends rather than struggle to do a bit of gardening. Walking around the block on a good day has replaced biking for the day and listening to music has replaced the square dancing that I always enjoyed. My neck is deformed, my hands and feet are twisting and even though Remicade has slowed the progress, I sometimes feel fear of what will be 10 years down the road. Managed? Full and active life? Only inmy dreams anymore. Now that I have vented I do feel better, although not less pain or more motion. Oh well, I am what I am and thats all that I am.

[makeitgoaway]

"Psoriasis is a manageable condition that should not have to prevent anyone from living a full life."

I didn't find that statement in the website, which is extensive. Is that a quote from Dr. Lebwohl?


I do not know who wrote the article, but I would suspect it was not Dr. Lebwohl.

Mark Lebwohl, MD, has been practicing dermatology since 1983. He is professor and chairman of the department of dermatology at The Mount Sinai School of Medicine. Lebwohl is president of the New York State Society of Dermatology and has served as president of the Manhattan Dermatologic Society and chairman of the Dermatology Section of the New York Academy of Medicine. He is the current chairman of the Psoriasis Task Force of the American Academy of Dermatology (AAD) and has directed the AAD's annual Psoriasis Symposium, Diagnostic Update Symposium, Therapeutics Symposium, and the patient viewing session. He is a member of the Scientific Assembly Council and led the Academy 2001 in California.

Lebwohl is a member of the Medical Advisory Board of the National Psoriasis Foundation and editor of Psoriasis Forum as well as medical editor of The Bulletin of the National Psoriasis Foundation. He is the "medical pearl" feature editor as well as assistant editor of the Journal of the American Academy of Dermatology. He has led numerous symposia and has written or edited several books including Difficult Diagnoses in Dermatology, Psoriasis, and Atlas of the Skin and Systemic Disease. Lebwohl has authored or co-authored more than 400 publications including articles, chapters, and abstracts. He is actively involved in clinical trials of new dermatologic treatments.

Here is the contact information:

CONTACT: Kristin Jones, Porter Novelli, 212.601.8455 or kristin.jones@porternovelli.com kristin.jones@porternovelli.com> Joanna Rice, Porter Novelli, 949.218.7180 or joanna.rice@porternovelli.com joanna.rice@porternovelli.com>


I'm sure they could answer.

[ouchyk]

Ann,

I think you have me mixed up with someone else with the hair salon, but honestly I do understand why you would be upset with the comment. There are so many who suffer and greatly.

That said, I don't know who or why that comment was said. I do know that dr's such as Dr. Lebwohl ( and many others ) are commited and dedicated to our cause and know psoriasis inside out, and I wouldn't want to give anyone the impression that he would have said that without knowing where the quote came from.

Also, I know that the future is a worry for many, I'm right there with you!

After the meeting I just attended please keep the faith that doctors are working very hard to find the answers and developing new treatments for us all. I don't know where we will be 10 years down the road but I hang on to the hope that IT WILL BE BETTER.

This is a good time to ask ourselves " How can I help become part of the solution "? One answer would be to advocate, write, call and visit your representatives. I know we can't all go to Capital Hill but look for and sign up for advocacy emails, send those letters, write, call visit locally if you can. It does help.

Karen

p.s. Cindy, I'm sorry you had a bad day, I can relate, I've had a very bad week myself and it's only wed! gnaaaaa...hang in there.

[einna]

Color me blonde...but I don't quite understand the original post. Were we supposed to be able to link into the model's interview? Was it a link to psoriasisconnect? Was it a plug for Dr. Weblohl? It mentions debunking myths and then states that psoriasis is manageable. I am truly not trying to be argumentative or antagonistic but I don't understand both the post and the reason for posting it.

Annie

[MikeK]

Thanks for posting this Steve. I just e-mailed this link (mms://windowsmedia.onthescene.com/adayinthelife.wmv) to several people (who haven't seen Fred's film) to give them an idea of why I don't wear shorts -- even during the hottest weather!

Cindy and Karen: I'm sorry that your both going though such a rough time. I hope that you both feel better soon.

Mike

[makeitgoaway]

Thanks for posting this Steve. I just e-mailed this link (mms://windowsmedia.onthescene.com/adayinthelife.wmv) to several people (who haven't seen Fred's film) to give them an idea of why I don't wear shorts -- even during the hottest weather!

Cindy and Karen: I'm sorry that your both going though such a rough time. I hope that you both feel better soon.

Mike

I sent it to a few people too. They were all like, OMG - I had no idea!

[GitOverIt]

Uh-oh...I think I'm having deja vu here! :D

[MikeK]

I sent it to a few people too. They were all like, OMG - I had no idea!That's the same reaction I'm getting! :cool: It's amazing how much people don't know about psoriasis. (My own mother thinks that it's just very bad dry skin!) I was suffering and deeply offended by those "Heartbreak of Psoriasis" commercials (and by similar "jokes" made by Johnny Carson on the Tonight Show) during the late 60's and early 70's. :mad: If they only knew! (I was just a kid and it never would have occurred to me to write a letter and tell them what I thought!) It would have been great if something like this could have existed then!

Mike

[SuzanneT]

Well, I think I felt the same way when I read that this morning about a "manageable condition". Don't I wish! A full life to me would not include hobbling around because I have such painful blisters on the bottoms of my feet that I can't walk somedays, or on my hands so bad that I can't go to work because I can't meet with my clients with pustules all over my palm. If I had a full life I wouldn't be debating whether I should buy a wig because so much of my hair has fallen out as a side effect of a medicine I took that didn't work anyway. In a full life I would be out doing something fun at night instead of light treatments. I could go on and on, but we all have the same sort of issues.

One thing I thought was interesting about the movie, was that the 'model' in the movie was a slim, young, very attractive woman. I wonder what the reactions would have been with a different model? :confused:

[SuzanneT]

Karen, what on earth are you doing on dial up???? No wonder it took forever!!! :eek:

[ouchyk]

Sue,

LOL I am moving soon and promise to get high speed whatever the heck it is wireless something or other and a laptop!! I'd like to see this filmclip in this century!

You did bring up a good point about the model.

I wonder if the point was to make an expose something like some TV news show do? I remember watching a show, not sure which, that had a model put on a suit to make her heavy, go for job interviews and capture it on film, then have her go out as herself...

I also wonder what it would be like if we all carried lil video cameras around with us getting clips of reactions :eek: and posted them here or on Discovery Health!!


Karen

[twinieten]

I wish my computer had sound. :(

[wildflowerAnn]

I would be happy to meet this model and my dermatology team and explain "A Day in the Life" of a psoriasis patient.

[einna]

I get it now, it was about the model. I just can't view it on my Mac. Oh well. How was the interview?

Annie

[MikeK]

I get it now, it was about the model. I just can't view it on my Mac. Oh well. How was the interview?

AnnieThis isn't about the model or the interview. It's about how people react to someone who appears to be covered with psoriasis. She may not have psoriasis but other people's reactions to her very realistic looking makeup is something that I personally have experienced. She's lucky she gets to remove her makeup at the end of the day. Unfortunately for me, I get to see people visibly recoil when my hands are in very bad shape. :( It would have been great if they could have used a real life sufferer, but my guess is the few real life suffereres would have been willing to expose themselves the way that she did. The "interview" is great educational tool, IMHO. I've gotten nothing but "I'm sorry. I had no idea." from everyone that I e-mailed it to.

Mike

[makeitgoaway]

This isn't about the model or the interview. It's about how people react to someone who appears to be covered with psoriasis. She may not have psoriasis but other people's reactions to her very realistic looking makeup is something that I personally have experienced. She's lucky she gets to remove her makeup at the end of the day. Unfortunately for me, I get to see people visibly recoil when my hands are in very bad shape. :( It would have been great if they could have used a real life sufferer, but my guess is the few real life suffereres would have been willing to expose themselves the way that she did. The "interview" is great educational tool, IMHO. I've gotten nothing but "I'm sorry. I had no idea." from everyone that I e-mailed it to.

Mike

Thanks for posting that Mike. I know some have had difficulty viewing the video. It seems that the point of the post has been missed by many. I think your description helps put it back on track! :D