Psoriasis Uncovered

At the beginning of last year, I developed an itchy, dry scalp. Shortly afterwards, my skin started to breakdown with small patches of intensely inflamed skin appearing in the strangest of places. This was subsequently diagnosed by a dermatologist, as being part of a condition called inverse psoriasis.

One weird aspect to having psoriasis is that nobody ever enquires about it except of course, your prescribing doctor. People would rather not know about difficult and embarrassing conditions so it’s rarely discussed. Many people think of psoriasis simply as an unpleasant skin condition but it’s much more than that. Psoriasis is a chronic immune system disorder, it’s non-contagious and it affects about 100,000 people in Ireland. There are many different types of psoriasis. Eight out of 10 sufferers will develop plaque psoriasis, which involves red scaly and often itchy plaques. Other types include guttate psoriasis, pustular psoriasis, inverse psoriasis, erythrodermic psoriasis, nail psoriasis, scalp psoriasis and psoriatic arthritis.

itchy4I wrote about my own situation shortly after diagnosis when I was literally itching for a solution and I received a great response from readers. It’s now exactly a year since I first started to itch and I’m no closer to finding a lasting treatment. I had hoped to be able to identify a contributing factor but other than finding out that I’m in the high risk bracket, I’m none the wiser. I recently weaned myself off using the prescribed treatment for my scalp and and lo and behold, my scalp is showing signs of improvement. My skin, alas, continues to break out in patches of intense inflammation no matter what I do or try, and it’s continuous battle to keep it under control. However, I know that things could be a lot worse especially when you consider some of the other forms of psoriasis but I still long for normal skin again.

The Psoriasis Association of Ireland in collaboration with Abbott, are running a campaign called Psoriasis Uncovered. The campaign aims to increase the understanding of psoriasis, the impact it can have on quality of life for people with the condition and the need for effective treatment. A new survey has been launched which is designed to find out the effect psoriasis has on people. If you suffer from psoriasis and would like to take part in this survey (it runs until March 2009), click here to complete a questionnaire. It only takes a few minutes to answer the questions and your answers are totally anonymous.

So, the next time you hear mention of psoriasis, please don’t drop the subject like a hot potato. Living with this condition is difficult enough. Your understanding would help a lot.

Information Source:  Psoriasis Association of Ireland; Psoriasis Uncovered.

10 Responses to Psoriasis Uncovered

  1. Grannymar says:

    I never heard of inverse psoriasis, does it have an itch you can’t scratch?

    Sorry Steph, I couldn’t resist that one.

    It is a serious topic and no fun for the sufferer!

  2. Steph says:

    Grannymar,

    Inverse psoriasis is also known as flexural psoriasis as it mainly occurs in skin folds. Contrary to the most common type of psoriasis (plaque psoriasis), inverse psoriasis is not characterized by scaling but it can get very inflamed and is made worse by scratching.

    And yes, some of those itches are in places you’d rather not be seen scratching 😉

    My ribcage is under attack at the moment (back and front) and has me just like the picture above, at night time.

  3. This is such an interesting post, Steph. A very dear friend has suffered from Psoriasis for years – I’m going to send her your link.
    You poor thing, I do so hope you find relief soon. I have heard that there is a place on the Dead Sea where they’ve done a fair bit of research using Dead Sea salts and mud.

  4. Steph says:

    Thanks! AV

    It’s nice to hear that this post may be of benefit to someone you know. There’s lots of helpful information on the Psoriasis Uncovered website.

    My psoriasis is not bad when you compare it to others but I still find myself wishing I could turn back the clock to the days when my skin and hair were carefree. Skin problems are terribly time-consuming with the amount of care needed and it’s also an expensive complaint. A lot of the treatments are trial and error, to the benefit of dermatologists and pharmacies!

  5. Baino says:

    My best friend had debilitating joint pain a couple of years ago. She’s underweight, fit, tall, beautiful and it took forever for her condition (akin to severe arthritis) to be diagnosed. It turned out that she’s had psoriasis inside her ears and at the back of her scalp for years (I never knew) and the link was made with her joint pain, she has Psioratic Rheumatoid Arthritis. . .all part of the immune system breaking down. She takes pretty tough medication when it flares up but is desperate for a more ‘natural’ solution to her ongoing problem.

  6. Steph says:

    Thanks Baino. Unfortunately, these immune system disorders are often very hard to diagnose and treat. They are also hard to accept and leave you with an intense desire to want to find out what triggered the problem. It seems that it’s a combination of factors that come together to work against you and finding a cause, is a bit like looking for a needle in a haystack.

  7. Jo says:

    I’ve had psoriasis for about 20yrs now, last year it got alot worse and spread. At the same time I started having severe pain in the bottom of my spine and hip, I am now going through the process of being diagnosed with Psoriatic Arthritis/Ankolysing Spondylitis which is also associated to PA. I never even new that Psoriasis was an immune system disorder until all this began. Sometimes the pain is excruciating. I’m 39yrs old.

  8. Steph says:

    Hi! Jo

    I’m sorry to hear of the tough time you’re having.

    I’d be interested to hear your views on the reaction you get to your psoriasis. Do you have to suffer in silence or do your friends/acquaintances enquire as to how you are? I find it astounding that a condition like psoriasis which causes so much daily misery, is rarely acknowledged.

    I seem to be one of the lucky ones as my psoriasis has vastly improved in recent months and I now only require minimal steroid treatment to maintain control. My scalp has also reverted to almost normal which is something I could only dream of this time last year.

    Thanks for visiting and I wish you all the best in the future.

  9. Jo says:

    Hi Steph

    It’s actually really good to talk to someone who has the same kind of problem!

    I think that most people who don’t get Psoriasis think it is just another allergy to washing powder etc. In all honesty even after having it for years albeit mildly until last year it was just something that I got. The only reaction I get is people cringe if I start scatching!!! It’s only in the last few weeks that I’ve found out that there are different types of skin psoriasis, I now know that my hands get covered in it, as they are now. I’ve also started getting nail changes which i believe is related to psoriatic arthritis, this I find difficult as my symptoms are worse while I am in bed, it improves with movement. People see me walking around which actually relieves the pain so they don’t realise just how painful it is.

    Jo

  10. Steph says:

    Jo – Thanks! I love to hear that this blog is helpful to others.

    Every time I see my dermatologist she always comments on my pitted nails. My nails have been getting more pitted every year (for years) and break terribly easily. I’ve given up hoping for nice nails at this stage. I hope this isn’t a sign of developing PA? I’ll be 52 shortly btw.

    My mother has some form of psoriasis (different to mine) and is now bed bound with arthritis, severe osteoporosis and dementia. Each of my brothers have a different presentation of psoriasis as well so it obviously runs in the family.

    Your mention of scratching had me laughing. I often forget where I am and start scratching when talking to someone and it’s only when I see their reaction that I realise what I’m doing 😀

    Take good care.

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