Born that way?
An auto-immune condition that leads the body to attack its own cells, lupus causes inflammation and tissue damage, affecting the skin, joints, heart and kidneys. In extreme cases, it is fatal.
Gaga is not the only celebrity to suffer from the debilitating condition. Seal’s facial scarring is a result of the lupus he developed as a child. Elaine Paige, too, has spoken publicly about the “devastating” symptoms that first appeared in 1989. A cold developed into flu, “then my joints became stiff and my neck, ankles, knees, hands and wrists became swollen and painful”.
Because it is notoriously difficult to diagnose – symptoms can include a facial rash, joint pain, numb fingers, hair loss, headaches and more – it took several visits to her doctor before treatment could begin. “The symptoms can range from very severe and, indeed, life-threatening, to relatively mild,” says Dr Max Field, a rheumatologist at Glasgow University.
“When it was first described, in the 1900s, two years later 19 out of the 20 patients they had found were dead. Nowadays you’d probably have five per cent dying within five to ten years.”
And the condition is incurable – “essentially because we don’t know the cause of it,” says Dr Field. “But there are treatments for the various symptoms. For instance, the joint and skin disease, which tends to be very common in our Scottish, Caucasian population, responds well to drugs like hydroxychloroquine, which is like a second cousin to quinine. But you can go right the way to the other side of the spectrum, where you are using the drugs you use to treat cancer because the disease is so aggressive, particularly for kidney disease and brain disease.”
It’s ironic that lupus is so little understood. Though relatively rare, it affects an estimated 50,000 people in the UK – that’s more than multiple sclerosis, ME, HIV and leukaemia combined. Arthritis Research has just announced funding research to the tune of £6 million in an attempt to track down the genes that cause it. It’s the UK’s biggest ever study of its kind and could result in a genetic test that would eventually predict who is most likely to develop the condition.
The results will come too late for 13-year-old Abby Tombs, from Glasgow. Born three months premature, she was never particularly well as a child. A blood test eventually picked up problems with her kidneys and she was diagnosed with lupus at the age of nine. Her parents, David and Margaret, were gobsmacked: they had never even heard of the disease.
“They told us not to go on the internet,” recalls David, “so, of course, that was the first thing I did. Going through my head was, ‘Why us?’ We’ve had so many problems getting Abby. We’ve had two stillbirths and 13 miscarriages, so when Abby came along she was everything to us. To find out nine years down the line that she has this incurable illness, we thought, ‘What have we done to deserve this?’”
When Abby first started school she was teased relentlessly. “She was overweight because of her steroids, constantly red-faced, and the boys ended up going, ‘Look at you, beetroot face.’ One day she was in IT and Abby said, ‘Do you want to know why I’m always red?’ And she loaded up a story on the computer and said, ‘Read that.’” It was a news story about an award she’d won for her fundraising work.
“She’s so brave,” says David. “It stops her doing gym at school – she gets out of breath quickly. But she doesn’t let it get her down.”
“We let her lead as normal a life as she can,” adds Margaret. “She’s so strong – I don’t know where she gets it from.”
She was particularly low immediately following diagnosis, when she was constantly getting nosebleeds. “She had a particularly bad one and she turned to me and said, ‘I wish I was dead,’” recalls Margaret. “My heart was in my mouth; I didn’t know what to say. The doctor advised counselling, but after four visits the counsellor said she didn’t need it any more. She pulled back up and she wanted to help other people.”
Her mum says it helps to know that stars such as Seal and Elaine Paige have the same disease. “She loves ‘Kiss from a Rose’ and would love to meet Seal.”
For now, she remains on a cocktail of medication, and is taking part in any research projects and drug trials that come her way. “She wants to help other people in any way she can,” says Margaret, “she’s out to look for a cure.” n