Tuesday 27 September 2016

Living with psoriasis: 'One night, I collected all the dead skin that had fallen and it was the equivalent of a 2lb bag of sugar'

Grace Kelly has suffered from a chronic skin problem for years. Now, she tells how she is taking back control of her health, especially from a psychological point of view, and hopes to help others with similar problems

Joy Orpen

Published 04/07/2016 | 02:30

Grace Kelly: I've been in a lot of pain. It's a vicious circle. Photo: Andrew Downes.
Grace Kelly: I've been in a lot of pain. It's a vicious circle. Photo: Andrew Downes.

Although Grace Kelly (36) suffers from a devastating skin disease, she says it's the psychological aspects of the condition that cause her the most pain.

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Grace, who comes from Ballinasloe in Co Galway, was perfectly healthy until the age of 16, when a tiny patch of dry skin appeared on her scalp. Over time it spread, so her mother took her to the doctor, who diagnosed dermatitis (inflammation of the skin). Unfortunately, Grace's condition deteriorated. "It spread down my forehead, to my ears and eyebrows and the sides of my nose," she explains. "Being a teenager made it even more difficult. But I always thought I'd get a cream which would make it better, or I'd grow out of it over time." For a whole year, Grace tried various creams, but with little or no improvement.

Finally, when she was 17, a dermatologist in Mullingar diagnosed psoriasis. "I hadn't a clue what that was," says Grace, "and neither did my family. The doctor said even though it was incurable, there were ways to manage it." According to the Irish Skin Foundation, psoriasis is a chronic, systematic inflammatory disorder, in which there is an increase in the rate at which skin cells are produced and shed. As to the cause, Grace says, "As a child, I had repeated bouts of strep throat. When they stopped at 16, I immediately developed psoriasis. At the time, doctors said there was no connection. However, they now believe there is a link, and that there may be a genetic factor as well." Grace says she was grateful to finally have a diagnosis, as it meant she could educate herself about the condition. She has even read up on the history of psoriasis, and has discovered it was mentioned in the Bible; it has been confused with leprosy, and the boiled blood of a viper was considered a useful cure. "I probably wouldn't have lasted long in those days," she quips.

Grace says her situation was eased somewhat because she has a circle of good friends, and a really supportive family. Nonetheless, choosing a dress for her school's graduation became a nightmare. "Because my skin sheds so much, I can't bear to try on clothes in public," she explains. In spite of all the problems associated with this infuriating condition, Grace, armed with her various creams, went off to live in Birmingham for the next few years.

In 1999, she began to experience swelling and pain in her hands. Following her return to Ireland, she learned that she was suffering from psoriatic arthritis (PsA), a condition that sometimes affects people with psoriasis. This causes red, scaly skin, discolouration of the nails and painful swelling of the joints. It can also cause dactylitis, a sausage-like swelling of the fingers and toes. Grace was prescribed a particular drug to help her joints and skin; and while it relieved some of the symptoms, she had a very bad reaction to the medication.

At that time, she was working for a solicitor in Ballinasloe. Apart from the fact that she has large, angry-looking patches (plaques) all over her body, she leaves a trail of skin wherever she goes, and this embarrasses her profoundly. "I'd look down from my swivel chair and see all this dead skin lying around on the floor," she says. In 2002, she was seen by a skin specialist at the dermatology department at University Hospital Galway (UHG). "She told me my condition was so bad, I should have been hospitalised. But even so, they never found a bed for me," Grace says.

Grace underwent a number of different therapies at the outpatients' clinic. She had a tar-like substance painted on her skin; she had phototherapy (which, unfortunately, burned "good" skin on her back) and she tried any number of creams. In 2008, she was finally forced to give up work as a legal secretary, as her health had deteriorated so much that she was constantly travelling up and down to the clinic in Galway.

When her joints became very inflamed, she was referred to the rheumatology department, where she was injected with a particular medication, with startling results. "The sausage digits (swelling of fingers and toes) disappeared, and my skin began to clear up," she remembers. "I thought, 'Oh my god, I'm going to be free of all this'. All the silver flake had gone, the avalanche of dead skin was gone. It was brilliant - we were all on cloud nine." But sadly, her euphoria was short lived.

By now Grace had fallen in love with English man Simon Price. When she became pregnant with their son, Cillian, in 2010, she had to stop the injections. Consequently, all her symptoms returned. But she reckoned she would resume the treatment after the birth. She did, but sadly the medication no longer worked its magic. In 2015, the couple's second son was born and this event triggered the worst flare-up ever. Grace continues to suffer the pain of arthritis and the indignity of the constant itching and skin-shedding.

"At home, we vacuum 10 times a day," she explains. "One night, I collected all the dead skin that had fallen between 9pm and midnight; it was the equivalent of a 2lb bag of sugar. When other people are having sweet dreams, I'm pacing the floor; the itching can drive you absolutely crazy. Some days, I'm so fatigued I can't do anything, and I may be in a lot of pain as well. It's a vicious circle. Sometimes I think I just wasn't made for this world of ours."

Grace says in all the years that she has endured this infuriating and painful condition, she has never once been asked by a medical professional how she felt psychologically. So she has now decided to take control of her life. "I'm going to work on changing my attitude," she vows. "I'm going to stop referring to it as 'my' psoriasis. I'm keeping a food diary to see what does or doesn't exacerbate the condition.

"I have to keep in mind how lucky I am to have two beautiful, healthy children and a wonderful man like Simon in my life. He's become my carer; and apart from being a great dad, he sees beyond the psoriasis. So I'm not going to let this control me anymore," Grace says. "It's very much about mind over matter. The psychological aspects of this have been totally neglected by doctors. I'm going to work hard to change that. I'd love to see proper supports in place for people starting out with a diagnosis like this."

If you have any concerns about a skin problem, speak to your pharmacist or GP. Recently, a specific cream for mild to moderate psoriasis has become available over the counter in pharmacies. For more information, see irishskinfoundation.ie

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