Young mum Janice Johnson could hardly believe her ears as her doctor gave her his diagnosis. At the age of 26, the last thing she expected was to be told she had arthritis.
Janice had already spent half her life coping with the skin condition psoriasis and now, after the birth of daughter Wendy, she had sore, swollen joints in her hands and feet.
That the two were linked, however, was a complete shock - almost 40 years on, and awareness of the condition is not much better.
Psoriatic arthritis is related to skin psoriasis and sufferers can experience the symptoms of either in varying degrees - some people have both skin and joint problems, some have one and not the other.
The arthritic condition can leave people debilitated, exhausted and in pain. Skin psoriasis results in very itchy, scaly, red patches on the skin, which can flake and bleed. In addition to the extreme discomfort, sufferers have to cope with the self-consciousness caused by having a highly visible skin condition.
Janice is now 63 and a grandmother of three living in Broughton. She has spent her life coping with both types of psoriasis, and now runs Psoriasis Scotland, a charity which advises sufferers, lobbies politicians and aims to increase understanding and compassion among the public.
She says: “My colleague dealt with a caller recently and he said that people at work were calling him ‘leper’ - you find it hard to believe that people could say that in 2012.
“You’re trying to cope with your skin or your joints, and you’re also having to cope with nasty remarks as well.”
It is not simply the ill thought-out remarks that make skin psoriasis hard to live with - it is the misconceptions that arise when people see it.
“It still seems to be public ignorance. If people see something on the skin, they seem to believe that it’s infectious,” Janice says.
“It can look horrible, but it’s not infectious. There tends to be a lot of shedding of scales, which is embarrassing for a lot of people. People won’t go swimming and they think they’re going to get asked to leave the water. People can get very, very depressed.”
Janice’s own skin psoriasis is largely hidden, on places like her scalp, navel, and inside her ears. But it first afflicted her when she was at a particularly self-conscious age.
“I’ve had psoriasis since 1961,” she says. “I was 13 and I developed these lumpy yellow scaly patches on my scalp and I had very dark hair, so this showed up. Mum took me to the doctor and way back then it was ointments which I had to put on every night - for a young teenager it was very obvious and embarrassing. It was itchy and uncomfortable with the scaling, and when you scratch the scales off it tends to bleed.
“I managed to keep it well hidden but I couldn’t go on things like school trips, because I had to know there would be hot water for washing my hair, and so on.”
It was only after her daughter Wendy was born that the condition spread to affect her joints. She recalls: “I knew I had psoriasis but at that time I didn’t know there was such a thing as psoriatic arthritis. I was quite surprised to be told at 26 that I had any kind of arthritis.”
She was given anti-inflammatory tablets and tried to get on with motherhood, but life was suddenly much more difficult: “I had a baby to cope with and I had sore fingers, so it wasn’t easy. I kept having flare-ups, my toes were sore, my knees would flare up. At things like school sports, if they had a mother’s race I couldn’t run.”
In the past five years, her condition has sadly worsened. She now walks with a stick and suffers pain in her knees, ankles, feet and fingers.
The good news is that, since Janice was first diagnosed, treatment has improved. She says GPs are often still not very well trained in dermatology, but she encourages patients to be persistent.
More severe cases can now be treated with so-called “secondline treatments” if they need them - drugs which actually stop the arthritis getting worse rather than just treating the symptoms.
Janice gives herself a weekly injection of a drug called Humira, but says: “For almost 25 years they didn’t give me very aggressive treatment and I think now they would. It wasn’t until the 1990s that they offered me secondline treatment. My walking’s pretty bad and some of that possibly could have been avoided if I’d had early intervention for the joints,” she says.
“Wherever I go I have to make sure about access, I can’t do stairs easily and I can’t walk very far. If I was in St James Centre I used to be able to walk home, but I can’t do that now.
“When you have inflammation, you do get tired, because I have a lot of pain. I’m now on Humira injections, but because there’s a lot of past damage it can’t reverse that, so I might need a couple of operations.”
In 1998, Janice started Psoriasis Scotland and in 2004 it was registered as a Scottish charity. It has lobbied hard at Holyrood and helps to raise awareness of the condition, hoping to reduce the stigma for sufferers.
Janice has also worked with the NHS, Scottish Intercollegiate Guidelines Network and Healthcare Improvement Scotland to draw up guidelines for doctors to improve diagnosis and treatment, as well as a booklet for patients and carers.
But the organisation is run on a shoestring - it received a grant of GBP4000 over three years from the Scottish Government but, apart from one part-time staff member, is entirely reliant on volunteers, including Janice herself.
On March 3, it will host a public information meeting, where experts in the two varieties of psoriasis will speak, and patients can meet one another.
Places have to be reserved, but Janice says the calls she has been receiving only go to emphasise the sense of shame and embarrassment that often go with the condition.
“A lot of the calls have been women calling for their husbands and sons, saying ‘I don’t know if he’ll come’,” she says.
“There seem to be so many men coming along where their wives and mothers are pushing them, they seem to have a hard time going to their doctor. They don’t like to talk about it.”
It is calls such as these that serve to motivate Janice as she fights to make sure others receive the best treatment they can, and live the best lives they can.
Her biggest motivation, though, is her own family. She wishes she could run around after her grandchildren and is relieved that the only way they are affected is that her younger daughter, Laura, 34, has a small amount of skin psoriasis: “I think probably the main reason I do it is that my daughter’s just got a little bit of psoriasis - she does a lot of running and, if she was to develop even one joint problem, I can imagine the impact it would have on her.”
Raising the profile to spread the word
THE exact cause of psoriasis is unknown but it can run in families.
It occurs when the body’s immune system attacks healthy cells by mistake.
With skin psoriasis, the skin cells are reproduced more rapidly than normal and build up into raised, hot, itchy patches.In psoriatic arthritis, inflammation of the joints causes pain and stiffness. Sufferers may have one or both types.
One of the best-known sufferers of psoriatic arthritis was the writer Dennis Potter. He wrote TV series The Singing Detective, which featured novelist Philip Marlow, played by Michael Gambon, who suffered severely from both the skin and joint conditions.
Potter himself said the condition had reduced his own hands to “clubs”, and he had to write with a pen tied to his hands.
Treatments have advanced but it can still be a difficult and distressing condition to deal with.
To help people find out more about help available, Psoriasis Scotland, also known as PSALV, will hold a public information meeting on March 3, from 12.45pm to 4pm, at the SHSC Conference Centre, Crewe Road South (next to the Western General).
Speakers will be consultant in dermatology at the Lauriston Place Department of Dermatology, Dr Daniel Kemmett, and Dr Stephen Boyle, specialist registrar in rheumatology at the Western General.