Kelly Simpkin seems to have everything. Young and glamorous, she’s the girlfriend and — until recently — personal assistant of millionaire hairdresser Nicky Clarke, whose clients include Princesses Eugenie and Beatrice, Kevin Spacey and Jonathan Ross.
But behind closed doors, Kelly is in constant agony — she is one of 200,000 Britons with psoriatic arthritis (PsA), a form of arthritis where joint pain and severe fatigue is accompanied by psoriasis, an uncomfortable, itchy skin condition that causes unsightly red, flaky patches.
Her condition has become so debilitating that recently she was forced to give up her lucrative job at Nicky’s Mayfair salon.
I’m devastated — working at Nicky’s means everything to me,’ says Kelly, 30.
‘I’ve also had to go part-time as head of gentlemen’s grooming because I can no longer stand on my feet all day or use my arms and wrists to shave, style and blow dry hair.
‘Without hairdressing for a career I’m frightened for the future, but I have no choice.’
Her decision comes after a painful 20-year struggle to find out what was wrong with her — Kelly was given the diagnosis only in May.
‘There are more than 200 types of arthritis and diagnosing psoriatic arthritis can be difficult,’ says Dr Philip Helliwell, a senior lecturer in rheumatology at the University of Leeds and spokesman for Arthritis Research UK.
‘Over the years it can lead to bone erosion and joint damage, and ultimately loss of mobility if not treated successfully.’
Arthritis and psoriasis might sound very different, but in fact the conditions are both caused by an overactive immune system, says David Isenberg, professor of rheumatology at University College London. Indeed, up to 20 per cent of people with psoriasis (thought to affect 1.8 million Britons) will develop some form of arthritis as a result.
In arthritis, the immune reaction causes inflammation around the joints; in psoriasis it leads to the overmultiplication of skin cells.
Because the skin cells are not shed as quickly as they are made, scaly red and white patches develop.
‘Inflammatory cells enter both the skin and the joints, making the synovial tissues that line the joint swell, causing pain and fatigue,’ says Professor Isenberg.
‘This can be triggered by an infection or an accident, but a genetic predisposition is suspected.’
Kelly’s father suffers bouts of psoriasis and has arthritis in his ankle, but hasn’t been formally diagnosed.
Kelly can trace the first signs of her psoriatic arthritis back to her childhood — as a five-year-old she was hospitalised after her knees mysteriously began to swell up.
‘I had difficulty standing up,’ she recalls. ‘And my skin was shrivelling. I think that was the start of it.’
Fortunately for Kelly, her psoriasis remained only a minor problem for much of her life.
When she was 11 she hurt her right knee doing the high jump at school — a minor injury, yet Kelly ended up being on crutches for months because of the persistent pain.
At that point she was seen by a rheumatologist who diagnosed arthritis and prescribed the first of many courses of anti-inflammatory drugs. But it would be years before the connection between Kelly’s joint pain and the dry skin on her thighs was made.
‘Diagnosis was made complicated because my psoriasis wasn’t significant until this year,’ she says. ‘Even now, as it’s only on my upper leg, it’s not very visible.’
But her teenage and adult life was dogged by flare-ups of joint pain and malaise. She saw several different rheumatologists and doctors, and tried various treatments, from steroid injections to immune-suppressing drugs, but her arthritis started to spread and became more and more painful.
When she took a trainee job at Nicky Clarke’s salon four years ago, Kelly was experiencing a spell of remission. Romance blossomed within months. But soon her symptoms returned with a vengeance.
‘I was always open with Nicky about what I was going through and he was very understanding, even before we became romantically involved.’ Sometimes it was the side-effects of the drugs rather than the arthritis itself that caused the most difficulty, for example when a course of steroids caused her to put on a stone in weight.
‘Attending showbusiness events in skintight dresses that suddenly didn’t fit was hell, but Nicky didn’t mind, even though it took me a year to lose the weight!’ she says.
‘I’ve had terrible experiences, such as when we flew to Dublin to film a makeover and I flaked out with nausea due to methotrexate, a low-dose chemotherapy drug. We often have to cut glamorous events short because I feel poorly.
‘My fingers once went through a period where they became gnarled like that of an old woman’s. Nicky is very good — he rubs my knees, and on the days when I am rolled up in a ball in bed he cooks for me and won’t let me do anything.’
Indeed, it was Nicky who urged Kelly to see Professor Isenberg after a dermatologist recommended him. He diagnosed PsA.
‘As the psoriasis hadn’t troubled me much, it was a surprise — and a relief to finally know what was making me ill,’ she says.
There is no specific test for PsA — diagnosis is formed by studying symptoms and examining inflammation with an MRI scan.
Kelly is now taking a powerful new drug called Etanercept. It dampens down a cell known as the TNF molecule, which plays an important role in immunity and is thought to be involved in arthritis.
Kelly has to administer the pre-filled syringes, injecting herself in the stomach once a week. ‘I take a deep breath and get it over with, but it’s not pleasant,’ she says.
Etanercept was licensed for use in the UK in 2002, but it is expensive and only given as a last resort, says Professer Isenberg.
‘The problem is the price — £7,500 to £9,000 per person a year. At the moment, it is restricted on the NHS to those patients who have been shown, like Kelly, not to be responding to regular treatment.
‘The majority of people respond to conventional immune-suppressive drugs, but 30 per cent don’t.
She is also receiving treatment for psoriasis for the first time, in a steroid cream. Keeping the skin inflammation under control can in turn reduce inflammation in the joints.
‘Kelly may have been misdiagnosed because her psoriasis was spasmodic,’ says Professor Isenberg. ‘But if the treatment had been delayed any more, it could have led to permanent joint damage.’
Kelly is realistic about what her illness now means.
‘I realise it is unlikely I will be able to stay in the business I love,’ she says. ‘So I’m setting up an online fashion firm which I can ultimately run as a business. I’m an independent soul and I’m determined to carve a new future for myself.
‘I’m afraid I may end up in a wheelchair and I’ve joked about it with Nicky, saying, “Will you push me?” He always replies: “Of course I will.”
‘But we hope it will never happen.’