Tuesday, August 17, 2010

Psoriasis Awareness Month

August is Psoriasis Awareness Month. I have had psoriasis since I was 18 years old. It started with a nickel-size patch on my scalp, and, over the years, has spread to cover most of my body. It's painful, debilitating and affects every aspect of my daily life. I also have psoriatic arthritis. This is also a very painful disease. When I'm not flaring up, the pain and discomfort are tolerable, but I still have to deal with the way it looks. I do this by staying covered year-round, even during hot Georgia summers. I have recently started wearing short sleeves out in public from time to time, so I am making progress.

People don't understand what it is, or they think it's contagious (it's not). They stare and ask rude questions. This makes it even more important to raise awareness. People need to know what this disease is. The general public needs to be able to look at a psoriatic's skin and just think, "oh, that's just psoriasis" like it's no big deal. Because the social stigma that comes along with it makes psoriasis that much harder on a person suffering from it. If you see us wearing short sleeves and our arms are pink and inflamed, don't bring attention to it. And certainly, don't be afraid of it. You can't catch it. It won't hurt you. Treat us no differently than you would any person. Think of our lesions as unwanted tattoos in which we had no say. People with tattoos are accepted in society; why can't psoriatics be? We should be, and it's time to take our freedom back.

I want to raise awareness and get more people involved in helping to find a cure. It's as easy as writing your legislators and telling your story about psoriasis. You may only know me or someone else who has it. You don't have to have the disease yourself to get involved and raise awareness. Even if we can't find a cure, we can at least educate people so they know what it is. When people are educated, they are empowered. One person at a time, we can make a difference in the lives of psoriatics everywhere. At the very least, we can wear our short sleeves out in public without giving it a second thought and without the fear of embarrassment.

In the last issue of Scrap n' Art e-zine, I created a bust for psoriasis. It was a project exclusively designed for our July/August issue, and was an artistic way for me to tell my story. Here's a picture of it (click the picture to view larger):

There are several symbols I incorporated into this project. I can share a few with you here. First, the bust is split visually down the middle to symbolize a beautiful, disease-free side and an inflamed, psoriatic side. I used pieces of cardstock, glued on one-by-one, along with red and pink Glimmer Mists to represent the psoriatic side. The wings are there, one tethered and one free, to represent how having psoriasis and psoriatic arthritis is like being held back and imprisoned. The key represents my search for an effective treatment or cure. Those are just a few details. (More are in the issue!)

I got special permission from our Editorial Director, Candy Rosenberg (thanks, Candy!) to share it with you here and now. (Usually, there is a two-issue wait period to share Scrap n' Art exclusive projects publicly.) There are more pictures, close-ups and details about the bust in the July/August issue--to read more about it, subscribe here!

Thanks for checking out my post about psoriasis and looking at my project. And thanks for your help in raising awareness about this horrible disease!


Ginger said...

This is such an awesome post. You are the bravest person I've ever known and if you weren't my sister and just read this, I would still think so. I would be very, very sad because you weren't my sister but I would still be so proud of you and your bravery to face this damn demon that has held you captive for half your life. It's not right, it's not fair and it pisses me off. You don't deserve it. Thanks for the links. They make it so easy for anybody to go and send emails and print letters to mail to make the people who count aware of what they need to be focusing on.

I love you, you are such an inspiration to me every day and I pray for the day that you will feel free to wear your short sleeves everywhere. You're getting there!!

Anonymous said...

Amen to what Ginger wrote. This has been a hell for you and hard for us to see you so hurting. I admire you for all the strength you have shown through this. You are a special child and we love you and pray that all the knowledge scientists have will rise up and find a cure. You keep wearing your short sleeves . Keep it up. Love the awareness poster and the info to the links. Love you bunches.

Jennifer said...

Just hopping across some SNA gals' blogs...thanks for sharing your story, Amy. I love your creation.

Jennifer said...

And I should have called you Ami -- sorry!


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