Let’s Talk About Psoriasis

In the spring of 1993, I noticed a rough scaly patch developing behind one of my ears. At the time, I didn’t worry too much about it, thinking it was something to do with my glasses chafing.

The patch was soon joined by another in the folds of my other ear and slowly they began to spread upwards and round, into my scalp and across my brows. Alarmed, I went to the doctors for a chat.

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It turned out that I had psoriasis. It’s a chronic, life-long disease that cause the skin to develop five times more quickly than usual, creating sore red lesions and “plaques”, scales of skin. There’s no cure, and science is still looking for a cause. What we do know is that it’s linked to the immune system, and that it’s genetic. Turns out that my Mum had it when she was young, as did my nan on Dad’s side. It was bound to happen. For whatever reason, my two brothers have dodged the bullet that hit me.

It’s connected to arthritic problems, and at it’s very worst can cause painful blisters and lesions that crack and bleed. The disease affects roughly 3% of the population, roughly 7 and a half million people worldwide. Tom Waits has it, as does Kim Kardashian and Art Garfunkel. Horror director Eli Roth used his flare-ups as inspiration for his break-out (sorry) hit Cabin Fever. The point is, psoriasis can strike anyone, young or old. It’s not infectious, and has nothing to do with the lifestyle, diet or perceived cleanliness of the sufferer.

Sadly, there’s a lot of misunderstanding behind the disease. People with psoriasis have been stigmatised or shunned, or accused of having leprosy or even AIDS. You end up with something of a fragile self-image when you have an unsightly disease like this, and that attitude doesn’t help.

Like I say, there’s no cure, but the symptoms can at least be managed. Creams, ointments, so-called “biologics” that block parts of the immune system that cause the disease and even light-treatment in amped up tanning booths can help to make things less sore and itchy. And, in the case of phototherapy, mean you can swan around with a cracking tan in the winter.

Much of the ability to deal with psoriasis comes down to the individual and their attitude to it. You have good days and bad, flare-ups and calm times. At my worst, eighteen months after I had first felt the rough patch behind my ear, and a couple of months before I and the doctors finally found a combination of creams that worked, I had grown a mask of lesions that covered my forehead and was tucking around my cheeks. It’s tough to put a brave face on something when you can see that face gradually disappearing before your eyes.

For the most part these days, it’s manageable and I feel generally presentable, although it’s been a while since I’ve been swimming. Apparently there’s a volcanic spring in Iceland that does great things for psoriasis. Perhaps I should visit.

I’ve wanted to write about this for a while, but as a typical British male don’t want to be seen to complain. Which is, of course, part of the problem. But as today is World Psoriasis Day, I have the perfect excuse. The theme of the event is “Let’s talk about psoriasis – and take action!” which seems to make a lot of sense. If there are people out there that look at someone with the disease and think they’re a leper, or that it’s no big deal, then I need to do something about it. Like all chronic diseases, psoriasis has a toll that’s often difficult to talk about and be understood. But it’s important to try.

Psoriasis is, for better or worse, a part of my life. Like all my brothers and sisters with the disease worldwide, I’m hoping and waiting patiently for a cure. Until that happens, I’m dealing with it day by day, a tube of goo, a ray of sunshine and a wink in the mirror at a time.

Find out more at the World Psoriasis Day site.

And why not watch some films made for the NPF’s Awareness Month Film Festival?

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Published by

Rob

Writer. Film-maker. Cartoonist. Cook. Lover.

2 thoughts on “Let’s Talk About Psoriasis”

  1. Rob. I have this also.
    I put it down to stress.
    I notice you have made no mention of stress in your post.
    What are your thoughts on this.
    Also, where I have had particually bad episodes in parts of my scalp I have lost patches of hair there also. My barber has done a great job of covering up but I had a patch the size of two to three £2 pound coins. Thus grew back(grey) and then I developed a patch on the other side where my scalp was bad. I still have that now with no signs of it growing back just yet.
    I’m sure stress is the cause of both the hair loss and the skin problems.
    I also had a small patch say about the size of a pea of dry skin on my waist area which just didn’t go away. It didn’t bother me but now it has gone.
    Strange.
    Rich

    1. Rich:

      sorry to hear that, mate. I had no idea.

      Stress is certainly a contributory factor, and has been known to spark a flare-up. But there are so many different triggers that it’s difficult to call it a cause, per se.
      I’ve tried everything to shrug it off, from Chinese herbs and acupuncture to changes in diet. Topical creams from the doc work best at keeping it under control, and the odd dose of phototherapy can work wonders. Cutting back on the booze also helps! I’ve just had to come to accept that I’m stuck with it, at least until some magic gene therapy pill hits the store.

      The forum at the Psoriasis Help Organisation has a lot of interesting stuff and plenty of advice on scalp p, which might just sort you out.

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