I know - some of you may would rather focus on the other holiday that sometimes overshadows it - Halloween. But for the rest of us, around the world, we know how to celebrate!
Without masks!
[Here is the link to LeAnne Rimes’ site, urging other people with psoriasis to “Stop Hiding”: http://www.stophiding.org]
So, though I have not (yet!) reached my ideal of becoming a famous country western star, I do have a lot in common with one. Psoriasis.
What It’s Not
It’s not a skin disease, just so you know. It’s an immune disorder that (as of now) has no cure.
[Here’s a link that explains the science behind it, how your T-cells go into hyperdrive: http://www.signalsmag.com/signalsmag.nsf/0/59D864E70A7D28DB88256B020013FA6B ]
Basically, I am super-human. I develop skin like 25 times faster than you do. The downside is… well, there are a lot of downsides to it. But let’s just focus on how I’m better than you!
Stuff About It
While what most people know about psoriasis is how it looks, here are some other things about it:
I read a forum entry this year from a girl who said:
Yes, psoriasis psores are unsightly and in today’s world where looks are so important, it does lead to “heartbreak.” So in addition to the physical (incessant flaking, bleeding, hot skin and worse!) there are the social sores. Emotional and mental, working away at your self-esteem and value on the planet.
Bullying and comments are especially hard for kids and teens to deal with. That’s why tomorrow’s annual international psoriasis awareness day is focusing on Childhood Psoriasis. Poor kids! It’s enough to deal with when you’re a (reasonably) grown-up person!
Not for Sissies
For instance, one patient describes it like this: "I feel like someone has poured itching powder through my head and it is running down my veins."
But my descriptor is more like, it feels like someone is holding a lit match up against my skin.
For me, over 80% of my body is covered with it, so it’s more like a hundred matches.
Insult to Injury: Arthritis!
Phil (I call him Phil) http://www.prnewswire.com/news-releases/phil-mickelsons-arthritis-shocks-golf-world-psoriasis-cure-now-says-a-reminder-that-psoriatic-arthritis-is-a-serious-disease-100428579.html has the arthritis kind, too, which is hard to believe for a world-class golfer! (Part of the interview with Phil at the bottom of this entry.)
Phil uses a Humira treatment that costs about $1,000 a week to keep his suppressed; people like Mr. Cruz can’t afford that kind of help. Especially long-term. Often, they (we! ) can get discounted treatment or insurance will cover it; but for insurance companies, it is a stop-gap measure. Not a permanent treatment to an incurable affliction. They want you to get better and get off the expensive drugs. Yet, the drugs do not cure it - they just mask its symptoms.
No Masks, Please
An actual cure is what’s needed. I know a lot of people are all about curing cancer… If I could, if it hadn’t already been done, I would start a pink-ribbon or red-ribbon campaign to promote research and legislation supporting research for psoriasis and psoriatric arthritis. Maybe our color should be plaid??!! To help, again, I ask you to lobby your politicians for awareness.
My People’s International Day
If you’ve stuck with me this far, I say “thanks!” If you haven’t… well, you aren’t reading this, so I can say anything I want, can’t I? Probably I should say, “I know you’re busy. Take care that stress doesn’t sneak up on you! or hope that I don’t sneak up on you and scare you! After all, tomorrow is Halloween!”
-- Cindy
More:
Interview with golfer Phil Mickleson:
• You can’t catch it. It’s not contagious.
• It’s a genetic disorder. So… thanks, ancestors!!
• The bleeding that accompanies it can be so severe that… well, if you’re close to me, you know. And if you’re not, you don’t want to know! Trust me!
• No cure as of yet exists. Lots of new treatments emerge all the time. Sadly, usually, psor-people develop resistance to the treatments, so while they may work for a bit, there’s a good chance their effectiveness will wane. That’s how it’s been with me for a while, but I have hope.
• Legislation for research is always near, and you can help. Instructions for how to approach or write your senator or representative are here: http://www.psoriasis.org/NetCommunity/Page.aspx?pid=1428
I read a forum entry this year from a girl who said:
I want to just get a T-shirt to wear on the subway that says, “No! It’s not contagious! Stop your snotty looks!” or one that just says, “Yes. Leprosy.”
I would buy that second one!
(On the days I'm not feeling strong, that is. Not feeling strong, yet in public, where people will comment on anything that is "wrong" with you. My favorite non-strong moment was when a cashier at Target asked, "What is that?" and my friend with me told her, "Chlamydia." THAT shut her up!! But most days, I'm okay with it, and can actually be peaceful and understanding of people's interest. Otherwise, I would do what somoene else suggested, when a woman in a changing room would NOT let it go, "Oh, Lord, you poor thing. Are those burns? How did that happen?" that I should reply, "Oh, Lord, you poor thing. You're so overweight. How did that happen?"
Bullying
Yes, psoriasis psores are unsightly and in today’s world where looks are so important, it does lead to “heartbreak.” So in addition to the physical (incessant flaking, bleeding, hot skin and worse!) there are the social sores. Emotional and mental, working away at your self-esteem and value on the planet.
[Here is a recent article & study about bullying and psoriasis, an excellent and interesting tale: http://au.ibtimes.com/articles/76609/20101028/new-research-shows-young-australian-with-psoriasis-bullied-and-isolated.htm and a quote from it:
"People often underestimate just how far-reaching the implications of a condition that affects a person's appearance can be. Socially, sexually, emotionally, sufferers struggle. They are constantly embarrassed by the state of their skin and try at all costs to hide it from friends, colleagues and loved ones which in turn can lead to situational avoidance, relationship heartache, isolation and depression." ]
Bullying and comments are especially hard for kids and teens to deal with. That’s why tomorrow’s annual international psoriasis awareness day is focusing on Childhood Psoriasis. Poor kids! It’s enough to deal with when you’re a (reasonably) grown-up person!
Not for Sissies
For instance, one patient describes it like this: "I feel like someone has poured itching powder through my head and it is running down my veins."
[That’s from a fellow whose psoriasis began when he was in grad school!! Who knew graduate stress could trigger your dormant conditions!? His story: http://gradstudentmadness.blogspot.com/2007/10/heartbreak-of-psoriasis.html And here’s another woman’s story, how she created work-arounds in her life to accommodate the arthritis: http://www.revolutionhealth.com/conditions/living-with-psoriatic-arthritis/personal-story. ]
But my descriptor is more like, it feels like someone is holding a lit match up against my skin.
For me, over 80% of my body is covered with it, so it’s more like a hundred matches.
Not much helps; to cool down, I can shower. But water aggravates it, so afterwards, it’s worse. Oils and prescribed lotions help immediately, but turn into new layers of stuff that sloughs off, tearing away the skin with it.
Sometimes the pain is unbearable, but sometimes it’s the itching. While I’m sitting next to you, you’re probably thinking about how nice a day it is or if the Falcons have a chance this year. I’m thinking, “Don’t scratch in public. Don’t scratch in public. Don’t scratch in public.” Or “Don’t bleed on this lady’s couch. Don’t bleed on this lady’s couch. Don’t bleed on this lady’s couch.”
But enough about me - back to famous people.
Famous People
In addition to LeAnne, Phil, Joseph Stalin and John Updike, golfer Phil Mickelson has psoriasis. Not only that, he has psoriatric arthritis. Like me!! I’m so “in”!
Not everyone who has psoriasis has the arthritis, but for those of us who do, the arthritis is definitely the worst part. As bad and sometimes debilitating as it can be for me, though - at least I don’t have a family to support. Here is a bit from a NYTimes article about such a man:
But enough about me - back to famous people.
Famous People
In addition to LeAnne, Phil, Joseph Stalin and John Updike, golfer Phil Mickelson has psoriasis. Not only that, he has psoriatric arthritis. Like me!! I’m so “in”!
Not everyone who has psoriasis has the arthritis, but for those of us who do, the arthritis is definitely the worst part. As bad and sometimes debilitating as it can be for me, though - at least I don’t have a family to support. Here is a bit from a NYTimes article about such a man:
It is not just his knees that are prone to locking up; so are his elbows. He sometimes has to hold his lapels as he walks because he cannot completelyunbend his elbows.
In July 1999, Mr. Cruz quit his job at the CFS Bank branch in Starrett City, Brooklyn, because the pain got to be too much. He could walk only one block at a time before he had to stop to rest at a bench for 10 to 20 minutes.
http://www.nytimes.com/2000/12/23/nyregion/the-neediest-cases-severe-arthritis-disables-a-family-s-sole-provider.html
Insult to Injury: Arthritis!
Phil (I call him Phil) http://www.prnewswire.com/news-releases/phil-mickelsons-arthritis-shocks-golf-world-psoriasis-cure-now-says-a-reminder-that-psoriatic-arthritis-is-a-serious-disease-100428579.html has the arthritis kind, too, which is hard to believe for a world-class golfer! (Part of the interview with Phil at the bottom of this entry.)
Phil uses a Humira treatment that costs about $1,000 a week to keep his suppressed; people like Mr. Cruz can’t afford that kind of help. Especially long-term. Often, they (we! ) can get discounted treatment or insurance will cover it; but for insurance companies, it is a stop-gap measure. Not a permanent treatment to an incurable affliction. They want you to get better and get off the expensive drugs. Yet, the drugs do not cure it - they just mask its symptoms.
No Masks, Please
An actual cure is what’s needed. I know a lot of people are all about curing cancer… If I could, if it hadn’t already been done, I would start a pink-ribbon or red-ribbon campaign to promote research and legislation supporting research for psoriasis and psoriatric arthritis. Maybe our color should be plaid??!! To help, again, I ask you to lobby your politicians for awareness.
Steps to do so are found here: http://www.psoriasis.org/NetCommunity/Page.aspx?pid=1428
My People’s International Day
If you’ve stuck with me this far, I say “thanks!” If you haven’t… well, you aren’t reading this, so I can say anything I want, can’t I? Probably I should say, “I know you’re busy. Take care that stress doesn’t sneak up on you! or hope that I don’t sneak up on you and scare you! After all, tomorrow is Halloween!”
-- Cindy
More:
Interview with golfer Phil Mickleson:
"Every joint in my body started to hurt to where I couldn't move," he told a press conference, reported the New York Times. "I would just lay down and couldn't roll over."
"He is not being dramatic; that can literally happen to someone experiencing a flare of psoriatic arthritis," said Michael Paranzino, president of the nonprofit Psoriasis Cure Now. "One day you are feeling fine, and days later it can be difficult to get out of bed or tie your shoes. Psoriatic arthritis is a serious disease."
. . . .
"We hope Phil Mickelson achieves his dream of becoming the number one ranked golfer and that he wows us with great golf for decades to come," added Paranzino, of the patient advocacy group Psoriasis Cure Now.
"But for many people with psoriasis and psoriatic arthritis, even those who can afford the latest treatments, their disease is a daily battle. That is why research is so important. We need a cure for psoriasis and psoriatic arthritis."
Many people with psoriatic arthritis cannot afford the type of treatment Phil Mickelson is on, the cost of which can easily exceed$15,000 annually. And many psoriatic arthritis patients find that even the best treatments lose effectiveness over time.
