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MikeK
11-15-2006, 10:11 AM
What a difference a year makes! Here's a copy of a recent article in USA Today. (You may recall that last year USA Today ran a similar article that upset just about everyone. Click Here (http://www.psoriasis.org/forum/showthread.php?t=18105).)

Psoriasis affects 'everything'
Updated 11/13/2006 2:35 PM ET

Victoria Gardner Nye was only 17 when her disorder started to set her apart — from store clerks who wouldn't touch her hands, fellow subway passengers who moved away from her, and classmates who whispered that "maybe she has AIDS."

But Gardner Nye, now 34, doesn't have AIDS. She has psoriasis, a common, widely misunderstood immune system disorder that can cause patches of scaly, reddened, itchy skin to grow anywhere on the body. Her symptoms, including sometimes-intense physical pain, are better these days, but the rejection "still hurts," says the Cambridge, Mass., property manager.

Her experiences are familiar to many of the 7 million Americans who have psoriasis and especially to the 600,000 or so with severe cases.

For them, psoriasis is not just a cosmetic issue; it is a vexing condition that takes a serious social, emotional and physical toll. In addition to the skin symptoms, 10% to 30% of patients develop a related form of arthritis, according to the National Psoriasis Foundation (www.psoriasis.org).

"Psoriasis patients have a very visible disease that can affect everything they do," says Mark Lebwohl, chairman of the dermatology department at Mount Sinai School of Medicine in New York.

And now many have new reason to worry: An October study published in the Journal of the American Medical Association found a significantly increased risk of heart attack among people with the disorder.

The link is not fully explained by the fact that people with psoriasis often have other risk factors, such as high blood pressure, high cholesterol, obesity and diabetes, says lead researcher Joel Gelfand, a dermatologist at the University of Pennsylvania.

In the study, a 40-year-old with severe psoriasis was more than two times more likely to have a heart attack than someone that age without psoriasis — though overall risks remained much lower than for older people. A 60-year-old with severe psoriasis was 36% more likely to have a heart attack than other people that age.

One possible explanation: Psoriasis is caused by inflammation, which also plays a role in heart disease. Rheumatoid arthritis, another inflammatory disorder, also is linked with increased heart risks.

The study gives psoriasis patients more reasons to protect their heart health, Gelfand says, by controlling weight, blood pressure and cholesterol, not smoking, eating well, exercising and getting regular checkups.

One question the study did not answer: whether treating psoriasis itself and the underlying inflammation would do anything to lower heart risks.

But people with psoriasis already have ample reason to seek help. The problem is that no available treatment works for everyone — and some treatments are expensive and linked to serious side effects.

Traditional treatments include moisturizers and medications, including steroids, applied directly to the skin; light therapy; the immune-suppressing drug cyclosporine; and the cancer drug methotrexate. Medications in a newer class, called biologics, target specific immune cells that play key roles in the disorder.

But steroids and light therapy can damage skin over time, cyclosporine can damage kidneys, methotrexate can damage livers, and the biologics may increase the risk of some fatal infections and cancer. The new drugs also can cost $12,000 to $24,000 a year, and insurers sometimes refuse to cover them or require higher-than-usual patient co-pays, Lebwohl says.

Despite the risks and costs, patients with severe cases often try just about everything, Lebwohl says.

Additional drugs are in the pipeline. And studies are seeking better understanding of the genetics of the disorder, which runs in some families.

Have a health or medical question? E-mail kpainter@usatoday.com. Please include your name, city and daytime phone number. Selected questions will be answered in the paper.Source: http://www.usatoday.com/news/health/yourhealth/2006-11-12-psoriasis_x.htm?csp=34

dlruss
11-15-2006, 12:51 PM
And there's our very own Boston Support Group co-leader Victoria Gardner Nye, leading the article off!!!!!!!

Great article!!!!!

PJ Leary
11-15-2006, 04:48 PM
Mike,

You are right, what a difference a year makes! It's great to see Foundation patient leadership quoted as well as Gail! Do you think we scared them last year? ( hee hee ) Nothing like a ****** off bunch of flakes to mess up your day.

It's nice to see that USA Today decided to do their homework on this article, I think it was well done. With more attention being paid to psoriasis with biologics being advertised on TV, this is a wonderful time for all of us to bring awareness to the general public.

Looking forward to more good reading to come.....

scratchydee
11-15-2006, 05:09 PM
What a well written article!!!! It hit the nail right on the head. I am very impressed. I do remember last years article- what a disaster that was.
Thanks for sharing this Mike.
By the way who wrote this article? Was it the person with the email link at the bottom of the story? I think a "thank you email" is in order for publishing a well written and very accurate article.

MikeK
11-16-2006, 08:39 AM
Hi Dee,

You asked:By the way who wrote this article? Was it the person with the email link at the bottom of the story? I think a "thank you email" is in order for publishing a well written and very accurate article.The author's name is Kim Painter. (Your assumption is correct. Her e-mail address is shown at the end of the article.)

Mike

Raynard_the_Fox
11-16-2006, 10:56 AM
Great that you send them a letter of thank you Dee.

I did the same, its easy to get out the pitch forks and tourches when they mess up, and important but it also important to thank them for getting it right.

Since as we all know often time's they are not completely correct in there assement of P.

-Fox

seedoubleyou
11-16-2006, 02:52 PM
I just sent a Thank You e-mail to Kim Painter for a job well done. :)

alli
11-16-2006, 03:24 PM
Ditto to what Cat said- thanks Denise! I e-mailed as well.

ouchyk
11-16-2006, 05:07 PM
Big Kudo's to ying or is that yang?!

Great job Victoria. I'm proud of you.

xo!

scratchydee
11-16-2006, 05:09 PM
Thanks for the info Mike! I just sent my thank you email!! I hope to see many more accurate and well written stories in the future!
Thanks to everyone else who has emailed Kim Painter so far :D

alli
11-17-2006, 09:43 AM
I wrote my e-mail Thank-you yesterday and expected it to get lost in the hustle and bustle of the big cyber world out there. I was shocked that I recieved an e-mail today from Ms. Painter thanking me for thanking her :)
Fox said it before, it's so easy for us to yell and scream when they publish the wrong information, we need to pat them on the back when they get it right!

scratchydee
11-18-2006, 05:22 AM
I sent my thank you email as well and I also rec'd an email back from Ms. Painter. I certainly was not expecting that. Cool!!!! :D

ct69646
11-19-2006, 10:22 PM
I wrote my thanks =o)