5 Million Americans Need 5 Minutes of Your Time

[jshearer]

The National Psoriasis Foundation, for the first time ever, is launching a nationwide letter-writing campaign. We need your help to educate Congress about the importance of federal funding of psoriasis research.

If research for a cure is important to you, please take a few minutes to spread the word. Our powerful new Action Center makes it easy to make your voice heard! It will take less than five minutes to contact your representative and two senators in Congress on behalf of the more than five million Americans diagnosed with psoriasis and/or psoriatic arthritis.

Take Action Now! (http://capwiz.com/psoriasis/issues/alert/?alertid=7318706&type=CO)

And feel free to share the (optional) "personal story" that you include in your letters to Congress on this thread.

Thanks,
Joey

PS-Once you click on the link, please take advantage of the feature that allows you to spread this message to friends and family.

[nitegale]

A Moment to Reflect

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As Capitol Hill Day approaches and many are writing their letters, I have reflected on the very first year when my palms and fingers erupted in what was at the time, debilitating p. Although my hands have improved since then, I am taken back to that awful time as I prepare to write another letter.

Putting aside all the pain an agony I was in, with palms and fingers that were cracked, bleeding and fissured, and how very difficult it was to use my hands, emotionally the disease took it's toll on me. At work everyone noticed how awful my hands looked. I became so embarrassed I would take my charts and write them in another room. I constantly wondered what patients and their families were thinking when I approached them with hands like that. I would put gloves on anytime I went near a patient, even if only to take a blood pressure. I cried thinking I could never hold a patients hand to give them comfort. I agonized a great deal if I would lose my job. Finally, I went out on medical leave. I felt so frustrated and beat up emotionally, that at one point, I felt I would rather die than live with hands like this. I became very depressed. That was two years ago.

Not too long ago those feelings were stirred up again when I saw another members hands at one of the get-togethers. I vowed I would never go back to that awful feeling again even if it meant sacrificing my liver for my hands. Funny how this disease can force one to do things out of desperation.

This is why I feel it is so important that we all get involved in Capitol Hill Day, either by attending or writing letters. No one should ever have to suffer through those feelings or be forced to take medications that put our general good health at risk.


Joey,

Thanks so much for the new advocacy tool. It was so easy to submit my letter. It only took a few minutes and before I knew it my letters to all three elected officials were on their way.

For the most part, my personal story included much of the above story I posted on these boards a few months ago.

I encourage others to also join in and share their personal stories.

Marie

[makeitgoaway]

Can this be made into a stickey thread so that it stays at the top?

[nrasher]

This is so easy to do- I figured I'd give it a bump to the top

Nick-

The Sox could it again !!!

[nitegale]

This is just a little poem I wrote for my hopes of what this extraordinary event will bring.

One by one
You'll hear their stories
Their plights and struggles
Made to order

In evey hall
And every corridor
An emotional song
Will capture the hearts
Of many who've been wrong

From New York to California
They will get an earful
Of struggles and burdens
And many are tearful

Let's hope they will listen
And come to a conclusion
That this dreadful disease
Deserves more inclusion!
__________________

[Krys_Arbuckle]

I did it. I actually did it. I emailed my Senators and the president. It was so easy. Please take the time to do it.

[jshearer]

As of 8:55am Pacific Daylight Time, more than 3,000 letters to Congress have been sent through the National Psoriasis Foundation Web site.

Keep up the great work! If you have not already participated in this letter-writing campaign, please do so. And spread the word to friends and family.

TAKE ACTION NOW! (http://capwiz.com/psoriasis/issues/alert/?alertid=7318706&type=CO)

And stay tuned for further updates...

Thanks,
Joey

[jshearer]

Just wanted to let everyone know that a press release about the letter-writing campaign and Capitol Hill Day that we sent out is on Yahoo.

You can find it here. (http://biz.yahoo.com/prnews/050414/sfth120.html?.v=1)

We had about 4,800 letters written in the first 48 hours after we sent out the email Action Alert to our Members and friends.

If you have friends or family who would write letters, please email them the link to our Web site (www.psoriasis.org) and ask them to join us in asking Congress to increase funding for psoriasis research.

The basic research that happens at the National Institute of Arthritis and Musculoskeletal and Skin Diseases will lead to a better understanding of the genetics and mechanism of the disease. In turn, this will lead to better treatments and, eventually, a cure.

Taking action through our letter-writing campaign is quick, easy, and effective. Please spread the word to friends and family.

Thanks,
Joey

[ron5937]

A Moment to Reflect

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I became so embarrassed I would take my charts and write them in another room. I constantly wondered what patients and their families were thinking when I approached them with hands like that. I would put gloves on anytime I went near a patient, even if only to take a blood pressure. I cried thinking I could never hold a patients hand to give them comfort. I agonized a great deal if I would lose my job. Finally, I went out on medical leave. I felt so frustrated and beat up emotionally, that at one point, I felt I would rather die than live with hands like this. I became very depressed. That was two years ago.


Marie,
I'll bet most of us here share the pain you describe in your post. We have different ways of dealing with things.

I'm no longer very much embarrassed by my P. For a long time I would hide my hands, not wear shorts or sandals, avoid the beach, the pool, etc. But then I got older.

As most people with a few years under their belts will tell you (I'm 48), the older you get the less worried you are about what others think. On top of that, it turns out that other people aren't thinking about our malady nearly as much as we are.

For me, first I started admitting my disease to my friends. They understood. My friends weren't afraid to touch me. By talking about P with friends it becomes almost an academic curiosity. The worst thing is that they feel compelled to advise me on cures. But hey, they're just people and the intent is good if a little tiresome. Now I can discuss my derm visits with friends, or how my treatment is going. The care about me. These are the people I need to share my life. Talking with them was a good idea.

After it became an appropriate topic among my friends, it became far less bothersome when I would see strangers noticing.

The point is simple, if people are noticing my plaques, I tell them about them. I say "it's psoriasis... my skin grows too fast... it's not contagious." I show them. Once I do that, I'm no longer hiding it. I'm relaxed. What made me most uncomfortable about the stares is my concern that people were drawing the wrong conlcusion (cancer, contagious, etc).

This helped me a lot. Maybe it's not worth your considering. I'm not saying you should do what I do. I've been wrong about everything at least once and I'm wary of my own advice. But I offer it as something to think about.

Knowledge is liberating. That applies to those observing psoriasis as much as it applies to those with the disease.

[jshearer]

We just hit 6000 letters! If you have not yet contacted your representative and two senators, please click the link below my signature.

Thanks,
Joey