Juliet Rowan is a reporter for Bay of Plenty Times Weekend

World Psoriasis Day: My psoriasis story

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Juliet Rowan has guttate psoriasis, which has spread across her arms, legs and torso. There is no cure for psoriasis, only treatment. Photo/Juliet Rowan
Juliet Rowan has guttate psoriasis, which has spread across her arms, legs and torso. There is no cure for psoriasis, only treatment. Photo/Juliet Rowan

Psoriasis is something I have in common with Kim Kardashian and 125 million others.

At the beginning, it was just a few dull spots on my chest and legs.

Then one morning, I reached over my shoulder and felt a swathe of fluid-filled blisters across my back.

From there, they crept down my torso, morphing into scaly red blots on my stomach, arms and legs.

In the eight months since, psoriasis has continued its insidious creep, sometimes worse on my limbs, other times on my head.

Some days, it threatens to overtake my forehead and ears, at which point I attack it with lavish doses of steroid ointment.

Having psoriasis is like having an alien bug colonising your body, but the more confronting truth is it's not some outside force.

Psoriasis is the body attacking itself and a sign that something has gone wrong in the immune system.

Rather than taking weeks, skin cells form in days, the excess piling up on the surface in unsightly, itchy lesions.

In my case, they are many scattered spots - a form of psoriasis called guttate psoriasis - while for others, they manifest as large plaques.

On bad days it stings like needles, and in recent weeks the itch has been so bad, I've scratched until I bleed.

For months I've covered myself from head to toe in nasty, oily prescription creams that stain my clothes and sheets.

Usually, I look forward to summer but this year there is no way I want to wear shorts or a bikini.

When I braved the hot pools with my kids in the holidays, a woman looked at me in disgust and pulled her husband away.

"It's not contagious," I wanted to scream, but then I hardly blamed her.

At the start of this year I had no idea what psoriasis was.

Now it makes me want to buy a burkini.


There is no cure for psoriasis, only treatment, making it a bitter pill to swallow.

No one told me that the first few months and I'm still wrapping my head around the fact I have a complicated autoimmune disease unlikely to go away anytime soon, and possibly never.

The best I can hope for is periods of clear skin.

So far my psoriasis has not responded to topical treatments other than to temporarily dull it down, and the next medical option - ultraviolet light therapy - is not available in Tauranga where I live.

I have been offered immunosuppressant drugs to try and stem the production of skin cells but they would require regular blood tests and heart monitoring because of potential side effects, and I have been told there is no guarantee they'll work.

I'm not ready to go down that road yet so for now I'm just trying to take it easy - not too much wine or coffee, lots of fruit and vegetables, and more exercise and sleep. Coconut oil to sooth my skin if I'm desperate.

I'm also doing a bit of something I last did in the 1980s - sunbathing - because during a 10-day trip to India in September, when the temperature reached 36C, my psoriasis briefly settled.

But as everyone knows, lying in the sun is not without risk, especially when you've got a family history of melanoma.
In a lot of ways I'm lucky: I got nearly 43 psoriasis-free years.

For some psoriasis warriors (as many sufferers like to call themselves because believe me, you do have to be a warrior in the face of psoriasis), the onset is much earlier.

Children can get psoriasis and it most commonly starts between the ages of 15 and 25, striking young people when they are already grappling with the complex pressures of adolescence and early adulthood.

Up to 40 per cent of people diagnosed with psoriasis also develop psoriatic arthritis, a painful, inflammatory condition that can permanently damage the joints.

Psoriasis takes an especially high psychological toll - people with psoriasis are twice as likely to suffer depression and more likely to attempt suicide.

The visual nature of the disease can shatter self-esteem and some mornings, I cry when I look in the mirror.

In plain language, psoriasis is a mindf***.

Today is World Psoriasis Day, a day dedicated to the 125 million people worldwide with psoriasis and psoriatic arthritis www.worldpsoriasisday.com.

More than 90,000 New Zealanders have psoriasis and although my case is mild and I am a newbie compared to most, I have a glimpse into the impact psoriasis can have on your life.

Because I fell outside the usual periods of onset (as well as 15 to 25, there is another peak between 50 and 60 years old), it was not immediately clear what I had.

A trip to India in September, when the temperature reached 36C, temporarily dulled the spots on my legs. Photo/Juliet Rowan
A trip to India in September, when the temperature reached 36C, temporarily dulled the spots on my legs. Photo/Juliet Rowan

Even my dermatologist mother did not suspect psoriasis (to her credit, I was asking her to diagnose off iPhone photos I texted), and it was my GP who made the call.

When my mother found out, she told me psoriasis was a disease she hoped no one in her family would ever have, knowing as she does the difficulties patients face.

Lots of people have asked why I got psoriasis but I read something recently that struck a chord.

A hospice volunteer said it is always unhelpful when people ask cancer patients why they think they got cancer.

The truth is I have beaten myself up wondering about the reason I now have psoriasis.

Is it because I'm too fat, drink too much wine, don't exercise or sleep enough, spend too long in front of computer screens, live in an old house with asbestos in the walls, or is it because I've destroyed my gut with antibiotics?

I have suffered many bouts of tonsillitis and strep throat over the years and streptococcal tonsillitis is a known trigger of guttate psoriasis.

That said, I wonder why the last bout of strep was potentially the trigger when the countless others I had in the past triggered nothing.

Genes may play a part - my father recalls his own father getting a patch of plaque psoriasis at about the same age - but then equally so may stress.

My marriage collapsed three years ago and I juggle work with two kids, but even if stress is the reason, it doesn't change the fact I've got psoriasis - I just do - and agonising over why won't make it go away.
As a divorced single mum, I have often felt on the fringes and psoriasis has only amplified that feeling.

According to a survey by Psoriasis Association Southland, New Zealand's main psoriasis support organisation, 77 per cent of psoriasis sufferers hide their psoriasis and 94 per cent suffer embarrassment and worry about how others will react.

Nicola Abbott, a dermatologist at the Skin Centre in Tauranga, says lack of awareness about psoriasis, and particularly a belief that it is contagious, can compound the suffering of people with the disease. (See Dr Abbott talk more about the impacts of psoriasis and treatment methods below.)

Psoriasis is not contagious and now the power of social media is being used to try and break down stigmas about the disease.

A growing number of young psoriasis bloggers are talking openly about the effect psoriasis has on their lives - including on their sex lives.

British woman Holly Dillon launched the #GetYourSkinOut campaign a year ago and, with her brave approach of showing rather than hiding her psoriasis, she now has strong followings on Instagram, Twitter and Facebook.

British woman Holly Dillon is using her #GetYourSkinOut hashtag to raise awareness of psoriasis. Photo/ @getyourskinout on Instagram
British woman Holly Dillon is using her #GetYourSkinOut hashtag to raise awareness of psoriasis. Photo/ @getyourskinout on Instagram

Holly has been photographed undergoing psoriasis treatments to show the reality of living with the disease http://www.huffingtonpost.co.uk/2015/10/29/psoriasis-photo-project-get-your-skin-out_n_8398830.html and is also pushing to make psoriasis a higher priority on government health agendas.

Her story of being questioned when boarding a plane because an airline official obviously believed her guttate spots to be contagious made news here http://www.nzherald.co.nz/travel/news/article.cfm?c_id=7&objectid=11660301 and her media presence has been growing ahead of the start of Psoriasis Awareness Week in Britain today http://www.getyourskinout.com/media/.

Kim Kardashian has also gone public about her battle with the disease since being diagnosed in 2010.

After initially trying to hide her psoriasis, she recently wrote on her blog about a change in attitude.

"I don't even really try to cover it that much anymore. Sometimes I just feel like it's my big flaw and everyone knows about it, so why cover it?" she said.

http://elitedaily.com/entertainment/celebrity/kim-kardashian-psoriasis/1598248/

I'm not quite there yet (I still used makeup to cover the spots on my legs at a friend's wedding) but for me, psoriasis is a lesson in not taking things for granted.

I used to worry about looking fat in my swimsuit, now I'd just be grateful to have clear skin.

Psoriasis is also making me look at others with more compassion - the bald woman I saw shopping and the anorexic jogger.

Last weekend, my 7-year-old son told me my spots make him feel sick and my 5-year-old daughter said she would love me more if I didn't have them.

I told my children difference is not a reason to shun people but rather to give them love and support.

Each of us has our own battles and for the time being, mine is psoriasis.


DERMATOLOGIST TALKS IMPACTS AND TREATMENT OF PSORIASIS

The Skin Centre's Nicola Abbott says psoriasis can impact patients in a multitude of ways because not only is it itchy and painful, it is a long-term condition.

"While it can be managed," Dr Abbott says, "it cannot be cured."

As well as arthritis, she says psoriasis carries increased risk of cardiovascular disease, and psychologically, it lowers people's confidence.

"[It can have a] huge impact on relationships and increased risk of suicide."

Skin Centre dermatologist Nicola Abbott says psoriasis impacts people's lives in a multitude of ways. Photo/supplied
Skin Centre dermatologist Nicola Abbott says psoriasis impacts people's lives in a multitude of ways. Photo/supplied

She also highlights another indignity - the fact that psoriasis sufferers tend to shed scaly skin on clothes, bed sheets and the floor.

"They often can't wear black due to the colour of the scale."

She says it is difficult to comment on levels of awareness about the disease In New Zealand, having only recently returned here, but in Australia, where she worked the last eight years, there are misconceptions.

"It can be perceived as contagious [or] infectious so awareness in some areas is limited, compounding the psychological impact for the patient."

Dr Abbott says while psoriasis can be difficult to treat, good understanding exists of the cause and triggers.

"It arises in those with a genetic predisposition and triggers often include trauma, infection, some medications, alcohol, stress and increasing weight [or] obesity."

She says there are many new medications available that help manage and clear psoriasis in most patients.

"Best treatments depend on the patient's general health, type of psoriasis and its severity.

"There are a number of topical treatments we use for more superficial, thin disease, and for more widespread and thicker treatments, we use combinations of creams, light therapy, oral tablets and new injectable medications."

"There is a new class of immune-modifying medication that has become available over the past decade or so called biologics, which have produced fantastic results in a number of patients."

Efforts are being made to get light treatment up and running as soon as possible in Tauranga, she says.


PSORIASIS FACTS

What is psoriasis?
Psoriasis is a chronic inflammatory skin condition characterised by clearly defined, red and scaly plaques (thickened skin). It is classified into several subtypes, including plaque psoriasis, guttate psoriasis, scalp psoriasis and nail psoriasis.

Who gets psoriasis?
Psoriasis affects between 2 per cent and 4 per cent of males and females. It can start at any age including childhood, with peaks of onset at 15-25 years and 50-60 years. It tends to persist lifelong, fluctuating in extent and severity. It is particularly common in Caucasians, but may affect people of any race. About one third of patients with psoriasis have family members with psoriasis.

What causes psoriasis?
Psoriasis is multifactorial and classified as an immune-mediated inflammatory disease (IMID). Genetic factors are important, and aggravating conditions can include streptococcal tonsillitis, obesity, smoking, excessive alcohol, a stressful event, or medications such as lithium and beta blockers.

Associated health conditions:
People with psoriasis are more likely than others to have the following health conditions: inflammatory or psoriatic arthritis (affects up to 40 per cent of sufferers), inflammatory bowel disease (Crohn disease and ulcerative colitis), uveitis (inflammation of the eye), coeliac disease, and metabolic syndrome (combination of obesity, hypertension, gout, cardiovascular disease and type 2 diabetes).

Source: DermNet New Zealand

PSORIASIS INFO AND SUPPORT

There are many websites with information on psoriasis and an increasing number of social media sites raising awareness of the condition and providing support to people living with psoriasis. Here are a few from New Zealand and overseas:

www.dermnetnz.org/topics/psoriasis/
www.psoriasis.org.nz
www.mypsoriasis.co.nz
www.getyourskinout.com / @GetYourSkin Out / #GetYourSkinOut
www.beautifullyspotted.com / @beautifullyspotted
www.psoriasis.org
www.ifpa-pso.org





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