By . Diana Appleyard . PUBLISHED: . 17:35 EST, 1 February 2014 . | . UPDATED: . 17:35 EST, 1 February 2014 . To look at Kelly Simpkin, you would imagine that the head-turning blonde enjoys a jet-set life of frequent celebrity parties, swanky red-carpet events and lavish holidays with her famous hairdresser boyfriend, Nicky Clarke. But the reality is far from glamorous. For the 32-year-old faces a daily battle with the rare and potentially life-threatening disease lupus. This chronic auto-immune condition, for which there is no cure, affects 50,000 people in the UK – a staggering 90 per cent of whom are women. 'I won't give in': Kelly Simpson, 32, girlfriend of Nicky Clarke, 55, suffers from lupus, which causes the body¿s immune system to turn on itself and start killing its own cells . Lupus causes the body’s immune system to turn on itself and start killing its own cells, explains lupus expert Professor David Isenberg, academic director of rheumatology at University College Hospital, London, and Kelly’s consultant. The primary symptoms are inflammation, pain and tissue damage. The inflammation can cause pain, heat, redness, swelling and loss of function, either internally to organs, or externally to the skin. Internal and external symptoms can even be suffered at the same time. Then there are breathing problems and chronic fatigue. When the major organs are affected, survival for lupus sufferers is likely to be shorter than for those with only skin and/or joint disease related to lupus. Lupus patients often suffer unpredictable flare-ups followed by periods of remission. It all means that late-night parties are off-limits for Kelly: two glasses of wine would bring on a severe attack; wearing high heels for more than an hour leaves her knees agonisingly painful; and if  she stays out later than midnight, it takes days to recover from what feels like chronic flu. Her support: Kelly says her boyfriend Nicky Clarke sometimes has to help her get dressed in the morning as she is in so much pain . Some days Kelly cannot even make it out of bed, let alone get dressed and leave the house. She says: ‘Every day I wake with pain – a stinging sensation deep within my bones, which moves around the body. I also have chronic fatigue, so even if I have ten hours’ sleep at night, I wake up utterly exhausted. ‘On bad days, my fingers are so swollen that I can’t make a fist, and Nicky  has to help me get dressed. Sometimes  it flares up for a few days, sometimes  for several weeks, and I can be bedridden. I feel so sorry for Nicky as it is hard living with someone with lupus  – but he’s always been absolutely brilliant about it.’ Kelly first experienced lupus symptoms when she was 17. ‘I began to  feel pain and swelling in my fingers. I was studying computer science at college, and I thought it was repetitive strain injury. ‘The pain then spread to my wrists,  but when I went to see my doctor, I was first told it was growing pains, and then when I changed my consultant, rheumatoid arthritis. I tried to manage the condition with painkillers.’ The condition went undiagnosed, as is the case in many sufferers. Prof Isenberg explains: ‘Lupus can be very hard to diagnose as it mimics other diseases. It is diagnosed via the symptoms, by taking family history and by a series of blood tests. Treatment includes anti-inflammatory drugs, steroids and new ‘‘biologic’’ drugs which target the auto-immune system.’ ‘I liken lupus to friendly fire in a war situation,’ says  Prof Isenberg. ‘Our immune system is like  a radar – every day we are bombarded by millions of bacteria and viruses. 'The immune system identifies and fights these off, but with lupus the body cannot distinguish between our own cells and the invading forces.’ Lupus can cause strokes, excessive bleeding, kidney, heart and lung failure and blood clots. In the 1950s, sufferers had only a 50 per cent chance of surviving for five years, but now  about 90 per cent will survive for  at least 15 years from diagnosis. Treatments are advancing swiftly with a new range of biologic drugs – such as Rituximab. The disease’s profile was raised when pop singer Lady Gaga said there was lupus in her family but so far she had had no symptoms. lupusuk.org.uk . Kelly’s pain continued throughout her college course and into her early 20s when she worked as a trader in the City. She continued to try to manage the pain, but at 23 she switched careers and started working in the hairdressing industry, which is where she later met Nicky. The couple, who live in London, have now been together for five years. Hairdressing proved tricky, due to the swelling and pain in her hands, but she persevered as doctors continued to diagnose arthritis. Finally, last year, she saw another specialist and was told she had lupus. ‘I was really shocked, but it made sense and it was a relief to know what was wrong with me and what I was up against,’ she says. The exact cause of the disease remains unknown but lupus is thought  to have a genetic link, and Kelly’s family now believe her maternal grandmother had lupus as she experienced similar symptoms. Since the diagnosis, Kelly has tried  an array of medications and requires weekly hospital care for treatment  and monitoring. Her latest treatment,  a new drug called Rituximab, is a  powerful biological therapy that is designed to reduce the number of  B-cells, the type her auto-immune system over-produces. The Rituximab treatment was combined with a one-off shot of a chemotherapy drug called cyclophosphamide. She has had two treatments of the Rituximab, but takes further drugs and painkillers to manage her condition and her blood is screened in hospital. ‘Rituximab is like gold dust and costs about £5,000 per infusion via the NHS so I’m really grateful to have it, and it is helping as I have noticed some of my symptoms ease slightly since my second infusion,’ she says. She met Nicky, 55, when she joined  his Mayfair salon as a trainee hairdresser and has been able to benefit from her partner’s unwavering support. Kelly says: ‘He’s always known  about my pain and fatigue, since I first started working with him, and he has always been incredibly supportive  and caring. ‘He is constantly researching new treatments – we are now drinking lactose-free milk, as he thinks that  might help.’ Despite the severity of illness, Kelly is determined it will not affect her career. ‘Last June I launched my own fashion label, She Wears A Crown, and I would love to have a family with Nicky, but sadly with lupus you often miscarry so  I know it won’t be easy.’ She is now trying to raise awareness  of lupus. ‘I’m doing all I can to support the charity Lupus UK to help fellow sufferers. In 2015, I’m planning to do a husky sledge ride across Lapland to raise funds. ‘Being well and strong enough for that is my goal for the next year. I won’t be beaten by this.’
Fashion designer Kelly Simpkin, 32, has auto-immune disease lupus .
Lupus causes the body's immune system to turn on itself and kill cells .
She says her boyfriend Nicky Clarke, 55, helps her stay positive .
By . Diana Appleyard . PUBLISHED: . 17:35 EST, 1 February 2014 . | . UPDATED: . 17:35 EST, 1 February 2014 . To look at Kelly Simpkin, you would imagine that the head-turning blonde enjoys a jet-set life of frequent celebrity parties, swanky red-carpet events and lavish holidays with her famous hairdresser boyfriend, Nicky Clarke. But the reality is far from glamorous. For the 32-year-old faces a daily battle with the rare and potentially life-threatening disease lupus. This chronic auto-immune condition, for which there is no cure, affects 50,000 people in the UK – a staggering 90 per cent of whom are women. 'I won't give in': Kelly Simpson, 32, girlfriend of Nicky Clarke, 55, suffers from lupus, which causes the body¿s immune system to turn on itself and start killing its own cells . Lupus causes the body’s immune system to turn on itself and start killing its own cells, explains lupus expert Professor David Isenberg, academic director of rheumatology at University College Hospital, London, and Kelly’s consultant. The primary symptoms are inflammation, pain and tissue damage. The inflammation can cause pain, heat, redness, swelling and loss of function, either internally to organs, or externally to the skin. Internal and external symptoms can even be suffered at the same time. Then there are breathing problems and chronic fatigue. When the major organs are affected, survival for lupus sufferers is likely to be shorter than for those with only skin and/or joint disease related to lupus. Lupus patients often suffer unpredictable flare-ups followed by periods of remission. It all means that late-night parties are off-limits for Kelly: two glasses of wine would bring on a severe attack; wearing high heels for more than an hour leaves her knees agonisingly painful; and if  she stays out later than midnight, it takes days to recover from what feels like chronic flu. Her support: Kelly says her boyfriend Nicky Clarke sometimes has to help her get dressed in the morning as she is in so much pain . Some days Kelly cannot even make it out of bed, let alone get dressed and leave the house. She says: ‘Every day I wake with pain – a stinging sensation deep within my bones, which moves around the body. I also have chronic fatigue, so even if I have ten hours’ sleep at night, I wake up utterly exhausted. ‘On bad days, my fingers are so swollen that I can’t make a fist, and Nicky  has to help me get dressed. Sometimes  it flares up for a few days, sometimes  for several weeks, and I can be bedridden. I feel so sorry for Nicky as it is hard living with someone with lupus  – but he’s always been absolutely brilliant about it.’ Kelly first experienced lupus symptoms when she was 17. ‘I began to  feel pain and swelling in my fingers. I was studying computer science at college, and I thought it was repetitive strain injury. ‘The pain then spread to my wrists,  but when I went to see my doctor, I was first told it was growing pains, and then when I changed my consultant, rheumatoid arthritis. I tried to manage the condition with painkillers.’ The condition went undiagnosed, as is the case in many sufferers. Prof Isenberg explains: ‘Lupus can be very hard to diagnose as it mimics other diseases. It is diagnosed via the symptoms, by taking family history and by a series of blood tests. Treatment includes anti-inflammatory drugs, steroids and new ‘‘biologic’’ drugs which target the auto-immune system.’ ‘I liken lupus to friendly fire in a war situation,’ says  Prof Isenberg. ‘Our immune system is like  a radar – every day we are bombarded by millions of bacteria and viruses. 'The immune system identifies and fights these off, but with lupus the body cannot distinguish between our own cells and the invading forces.’ Lupus can cause strokes, excessive bleeding, kidney, heart and lung failure and blood clots. In the 1950s, sufferers had only a 50 per cent chance of surviving for five years, but now  about 90 per cent will survive for  at least 15 years from diagnosis. Treatments are advancing swiftly with a new range of biologic drugs – such as Rituximab. The disease’s profile was raised when pop singer Lady Gaga said there was lupus in her family but so far she had had no symptoms. lupusuk.org.uk . Kelly’s pain continued throughout her college course and into her early 20s when she worked as a trader in the City. She continued to try to manage the pain, but at 23 she switched careers and started working in the hairdressing industry, which is where she later met Nicky. The couple, who live in London, have now been together for five years. Hairdressing proved tricky, due to the swelling and pain in her hands, but she persevered as doctors continued to diagnose arthritis. Finally, last year, she saw another specialist and was told she had lupus. ‘I was really shocked, but it made sense and it was a relief to know what was wrong with me and what I was up against,’ she says. The exact cause of the disease remains unknown but lupus is thought  to have a genetic link, and Kelly’s family now believe her maternal grandmother had lupus as she experienced similar symptoms. Since the diagnosis, Kelly has tried an array of medications and requires weekly hospital care for treatment  and monitoring. Her latest treatment,  a new drug called Rituximab, is a  powerful biological therapy that is designed to reduce the number of  B-cells, the type her auto-immune system over-produces. The Rituximab treatment was combined with a one-off shot of a chemotherapy drug called cyclophosphamide. She has had two treatments of the Rituximab, but takes further drugs and painkillers to manage her condition and her blood is screened in hospital. ‘Rituximab is like gold dust and costs about £5,000 per infusion via the NHS so I’m really grateful to have it, and it is helping as I have noticed some of my symptoms ease slightly since my second infusion,’ she says. She met Nicky, 55, when she joined  his Mayfair salon as a trainee hairdresser and has been able to benefit from her partner’s unwavering support. Kelly says: ‘He’s always known  about my pain and fatigue, since I first started working with him, and he has always been incredibly supportive  and caring. ‘He is constantly researching new treatments – we are now drinking lactose-free milk, as he thinks that  might help.’ Despite the severity of illness, Kelly is determined it will not affect her career. ‘Last June I launched my own fashion label, She Wears A Crown, and I would love to have a family with Nicky, but sadly with lupus you often miscarry so  I know it won’t be easy.’ She is now trying to raise awareness  of lupus. ‘I’m doing all I can to support the charity Lupus UK to help fellow sufferers. In 2015, I’m planning to do a husky sledge ride across Lapland to raise funds. ‘Being well and strong enough for that is my goal for the next year. I won’t be beaten by this.’
Nicky Clarke, 55, suffers from lupus, which causes the body¿s immune system to turn on itself the body’s immune system to turn on itself and Her support: Kelly says her boyfriend Nicky