Helen O’Callaghan.

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Girl with psoriasis refuses to cover up and made a video to tell her story

Thousands of Irish children suffer from severe psoriasis, but Pearl Tier is not about to let the condition get her down, writes Helen O’Callaghan.

Girl with psoriasis refuses to cover up and made a video to tell her story

WHEN people stare at 10-year-old Pearl Tier, she turns around and asks what they’re looking at, before adding: ‘It’s not contagious, it’s only psoriasis. Google it — that’s if you can spell it!’

Pearl developed psoriasis just before her fifth birthday. It started with strep throat and within two days her whole body was covered. Admitted to Temple Street Children’s Hospital, the dermatologist knew immediately it was psoriasis.

“Staff said it was one of the worst cases they’d ever seen,” says Pearl’s mum, Stephanie, a Cabra-based care worker, who has another daughter, Errin, eight.

For the past five years, Stephanie has been “in and out” of Temple Street with Pearl and the little girl has been hospitalised twice due to psoriasis.

“It didn’t even look like psoriasis. It looked like she’d been burned all over her body. Her hands and feet are the only parts never affected.”

At the beginning, Pearl’s skin care regime seemed endless — two daily baths, each followed by application of moisturiser and steroid creams.

“She used to cry and I’d be crying with her,” recalls Stephanie.

Having her tonsils taken out, aged six, helped somewhat, but the little girl has been on a whole gamut of treatment including immunosuppressant medication and photo-therapy.

“In five years, she has never been 100% clear. It might go down to one or two little patches but she has never been clear.”

Stephanie understands it can be a natural reaction to stare when someone looks ‘different’. But it’s upsetting when stares are overt or accompanied by unhelpful behaviours.

“On the way to the hospital one day, a man moved away from us on the bus. You try to teach your child everybody’s different and to accept people as they are, but it’s hard when you have adults looking at her like that.”

In the playground, when parents move their children away from Pearl, Stephanie understands their worries but always seeks to explain: “I say ‘it’s only psoriasis — your child can’t catch it’.”

Since February, Pearl has been on Methotrexate, an immune system suppressant widely used for treating rheumatoid arthritis. Stephanie says the family knew Pearl would one day need to go on it.

“I was nervous at the start because there can be pretty bad side-effects but thankfully she hasn’t had any.”

Pearl takes five tablets on a Friday and supplements with folic acid every other day.

“Before she started the treatment, her skin had the texture of sandpaper. Now it’s soft. She isn’t clear of psoriasis but the skin isn’t scaly — it’s able to hold the moisturisers.”

Pearl’s skin care is less onerous now — moisturiser once a day, baths every second day (otherwise showers) and an overnight coal tar treatment for her scalp once a week.

She is delighted to be on her new meds — and they’ve come at the right time: Stephanie says she has become more body-conscious.

“I’ve noticed it at her doctor appointments. She’s 10 — she doesn’t want her mammy bathing her anymore.”

Yet Pearl, who’s in fourth class, is very positive about her psoriasis.

“She’s always saying ‘I’m happy in my own skin’. She even took it upon herself to make a video — ‘I’m Beautiful with Psoriasis by Pearl’ — the Irish Skin Foundation has used it on its website,” says Stephanie.

Clothes-wise, Pearl refuses to cover up.

“She wears her little shorts and dresses and belly-tops. She doesn’t mind wearing swimming togs at the pool. At the start, I would have been urging her to cover up because I was conscious of people staring. But I was passing my anxiety on to her so I had to stop.”

Stephanie worries about what the teen years will bring but she hopes Pearl will continue to deal with her psoriasis in her own inimitable style.

“Pearl never stops. She’s full of beans. She doesn’t follow the crowd. She does her own thing in her own style.”

Professor Brian Kirby, consultant dermatologist at St Vincent’s University Hospital, estimates there are “probably a few thousand” children under-10 in Ireland who are affected by severe psoriasis — where it covers a significant amount of the body and topical creams/ointments don’t work.

“If skin is red, flaky, sore and itchy and there’s a trail of dead skin following you around, it can impact very significantly on how life is lived, on the kind of work you do and what you do socially. There are people who don’t go outside the door, who stay at home, because of severe skin disease.”

Psoriasis, he says, can be particularly hard on young people and teens.

“Age 14 or 15 is hard enough anyway without having a skin condition.”

In the past, people with psoriasis were told by GPs, who could do no more for them, that ‘this isn’t going to kill you, go home and get on with your life’.

Professor Kirby says most people’s psoriasis can be managed by the GP but some cases do need specialist care.

“If your condition isn’t controlled by creams or ointments from the GP, you need to see a specialist [dermatologist].”

He says the big message is: in 2017, there are excellent treatments — there’s a medication for everybody’s psoriasis.

“There’s such a wide range of options that almost everybody can be treated to the extent that psoriasis isn’t impacting on their life. The ruined lives of the past don’t need to happen anymore.”

Let’s talk

* The Psoriasis Shout Out is an annual event that takes place in Manchester, London, Newcastle and Dublin.

* The aim is to get people talking about psoriasis — what it is and what it isn’t — and to bring psoriasis patients together with dermatology health professionals and patient advocates.

* The over-arching message is a positive one — it is possible to live well with psoriasis.

* The second annual Ireland Psoriasis Shout Out takes place in Dundrum Town Centre (Ground Floor, beside House of Fraser) tomorrow Saturday, May 20, from 9.30am-5.30pm. The event is free.

* The Psoriasis Shout Out is for anyone diagnosed with psoriasis or who think they have it and for anyone on a waiting list to see a consultant dermatologist about the condition.

* Consultant dermatologists and patient advocates will be on hand to offer free advice and answer any questions about living with the condition. It’s an opportunity to talk to dermatologists about your skin, to discuss treatment options and to speak to other psoriasis sufferers.

Psoriasis facts

— It’s a chronic, systemic, inflammatory skin disorder in which there’s an increase in the rate at which skin cells are produced and shed from the skin.

— It isn’t just skin deep — it can be linked to other conditions such as arthritis, anxiety, cardiovascular disease and depression.

— It’s estimated between two to three percent of the population has psoriasis – approximately 120,000 people in Ireland.

— Patients with severe psoriasis die on average five years younger than patients without the disease, predominantly due to cardiovascular disease.

— Modern therapies for psoriasis are highly effective. Patients with severe disease should no longer have to live with the debilitating condition.

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