Stories of Hope

Ronan Farrelly

"What is it? What can I do about it? Where can I go for more information?" These were the questions that filled 30-year-old Ronan Farrelly's mind when he was first diagnosed with psoriasis at the tender age of 13.

When Ronan was first diagnosed by his GP 17 years ago he said there wasn't very much information around for patients with the condition something, which he believes, is slowly changing thanks to the work of patient organisations such as the Psoriasis Association of Ireland.

"I was referred to a consultant in Dublin and it started from there. The consultant put me on standard routine ointments and UVB. That worked for a while. I went off it [UVB] for a couple of years and then went back on it again. Then after a while it just didn't work…In the meantime I got involved in the Psoriasis Association of Ireland and new avenues opened up for me."

Ronan is currently looking forward to commencing a course of biologic injections to treat his condition.

While psoriasis can be very upsetting for everyone that suffers from it, reports on the negative effects of having a skin condition tend to focus more on young women however, Ronan believes that it can have as much as an impact on the lives of young men, particularly in a social context.

"I am 30 years of age and single. I go out and try and meet someone and the first thing they see is the psoriasis. Then they just don't want to know."

Ronan suffers from guttate psoriasis on his back, scalp and flexures. He also has psoriatic arthritis and the condition covers 80 per cent of his body. He can trace it back to his grandfather on his father's side.

For the 30 year old from Trim in Co Meath the support he has received from family and his extremely close circle of friends has been a real help over the years.

"I am fortunate that I am in a close circle of friends and they see me for me, not me with psoriasis.

Ronan believes that the most important thing anyone with psoriasis can do is to contact his or her doctor as soon as possible to get help and "not to suffer in silence."

He also believes that is it important to talk about it with friends, family or members of the Psoriasis Association of Ireland.

For Ronan work is also an important resource in helping to get back to normality and gaining control over your life. Once he told his current employer that he had psoriasis and that it wouldn't stop him working, Ronan's employer was and continues to be very supportive.

"Work is important. It gives you a routine, gets you up and gives you something else to think about," he said.

As the North Eastern Chairperson and Website Administrator for the Psoriasis Association of Ireland, Ronan was keen to point out that the discussion boards on the website (www.psoriasisireland.ie) also provided an excellent means of communicating with other people with psoriasis which helped him enormously to deal with the condition.

"There is a positive side to it because we are such a small minority in the country, we can come together and talk about it, that really helps. I thought we should be called the itchy and scratchy club. When I think of psoriasis I think of Itchy and Scratchy, a sense of humour helps too," he smiled.

Learning to love the skin you are in

Louise Lamari

As someone who has suffered from psoriasis for 17 years Louise Lamari believes that the most important thing anyone with the skin condition can do is to "stop fighting it and start talking about it."

Now aged 41 Louise was first diagnosed with severe plague psoriasis at the age of 24. She has gone through all the different stages of treatment from tar shampoos to steroid creams and is currently on a biologic therapy which involves giving herself once weekly injections. While biologic therapy has vastly improved her physical condition- she now has just 10 per cent coverage as opposed to 90 per cent when she was first diagnosed- for Louise, the most important treatment was gained through talking to people and learning the love the skin she is in.

"Stop fighting it. The more you fight the more energy you use up, but it is negative energy and it does not achieve anything. It is much easier to live with psoriasis if you to accept, rather than fight it. Just accept it because there is no cure. It won't go away. It might get better, go into remission, you might have good days and bad days, and it might even get worse. But it is part of you… it is like wanting to change the colour of your eyes, you can't... you are born with psoriasis, you are born with the genes. It is not contagious..it is in your genes and you cannot remove those genes and replace them with others. So I would say stop fighting it. Do not suffer in silence; don't stop talking about it to your partner, your mother or your best friend. Don't stop talking about it then you will find that the more you talk the less you need to talk," Louise said.

In common with a number of people with psoriasis Louise also has psoriatic arthritis and as a result was hospitalised three years ago. When she was discharged from hospital she couldn't walk and despite her young age was forced to use a Zimmer frame. As biologic therapy has "absolutely helped" medically, Louise said that the next thing she had to do was to learn to live with her condition.

According to Louise one of the important things she had to do was to find the right cream and learn how to apply it properly. She advised anyone with psoriasis to keep trying all the different creams and eventually "you will find the right one."

Commenting on life with psoriasis Louise said she had to admit to herself that she had the condition and realise that while it was "very tough" she was not going to die from it.

"I don't think people talk about it enough because it is a skin condition, it is ugly it, is not nice to look at. There are very few people who will be photographed with it."

"You have to take control of your life back from psoriasis, yes it is an aspect of my life but there is a whole lot of other things about me... you can make life easier, you can manage your life with it and one day you might even learn to accept it."

For Louise getting involved in the Psoriasis Association of Ireland has been a real lifeline and she would encourage anyone with the skin condition to join up and get involved. "You can give so much back and get a lot out of it as well."

Perhaps surprisingly for some Louise has seen some real benefits of living with psoriasis and says that it has made her who she is today.

"It has made me more confident which probably sounds paradoxical but I believe my confidence has come because of or despite of it I am not sure which. I am very outgoing now. I wasn't before as I was in denial about my condition. I then became very aggressive because I was wasting so much energy fighting it. Now I have accepted that I have psoriasis I have become much more confident. I talk about it openly it and this allows other people to talk to me about it too. There are 100,000 people in Ireland with psoriasis so chances are that everyone knows somebody who has it. It is very important to keep talking," Louise concluded.