Lupus "No known cure, no known cause Cure
[Notice how the header was changed to 'Eternal struggle for pop star' for the net version, it is taboo to mention the word Cure. Also the date, the print version was March 29 while the net version has 8th April. And there is the usual Charity spoiler bit, added later.]
I was flying high with my band Eternal. Just weeks later I could barely walk. Doctors said there was no cure. But I found one.
March 29, 2005As part of girl band Eternal, Kelle Bryan spent the Nineties touring the world. But in 1999, she became seriously ill with the auto-immune disease Lupus and was told she could be in a wheelchair for the rest of her life. Here, she tells her story for the first time
A CROWD of 100,000 people had gathered in Hyde Park for the biggest music event of the Nineties — the first Party In The Park festival. For the first time, Eternal were high on the bill, alongside Robbie Williams, All -Saints and Lionel Ritchie.
I was so excited — it was going to be the most amazing day of my career so far.
What I didn't know was that it would also be my last performance with Eternal, the band I'd joined six years earlier, and that my life was about to change beyond all recognition. Within months, I'd be in a wheelchair, struggling to feed and wash myself, and facing a lifetime of degenerative illness.
A week after the performance, the band members told me they no longer wanted me with them and a stressful legal battle ensued. I tried to carry on, forging a solo career, but my body had other plans.
Just days before I was due to start recording in Italy, I went down with a bad cold. I felt severely fatigued and had ulcers in my mouth. My hand also went stiff.
My GP said I had Post-Viral Syndrome and told me to take paracetamol three times a day. But four weeks later, my face and my mouth were covered in ulcers and I couldn't eat; I had a scaly rash across my cheeks, and the pain and stiffness had spread to my arms.
My mum, Marilyn, was worried. She persuaded me to let our family dentist in East London look at my mouth. As soon as he saw the ulcers and the butterfly-shaped rash on my face, he said he thought I had Lupus, a debilitating auto-immune disease which affects the skin as well as the body.
He told me to ignore my GP and go straight to a specialist in Harley Street. But when I did, the results came back negative.
The doctor said I didn't have Lupus and just gave me steroid injections for the pain. They worked temporarily, but soon stiffness spread to my whole body and I couldn't move at all; I had to be lifted and carried everywhere by my mother and my boyfriend.
My manager did extensive research and insisted I get a second opinion. I saw Dr D'Cruz, a rheumatologist at the London Independent Hospital, and he admitted me to hospital.
After a week of tests, I was finally diagnosed with Systematic Lupus Erythematosus (SLE), the most common type, which affects about 3 in 10,000 people in the UK.
Doctors explained that the illness is caused by the immune system producing too many antibodies attacking, rather than protecting, your body. It affects skin, muscles, joints and major organs, so can, in rare cases, be fatal.
I would have periods of remission when symptoms were reduced, but I might never regain my full strength and could be in a wheelchair for the rest of my life.
THE DOCTORS who broke the news to me in my hospital room said that my liver and kidneys had already suffered damage because it had taken months to diagnose me. But further damage could be prevented with steroids, anti-malerials — and other immuno-suppressive medication.
However, there was a possibility that I'd be on this medication for the rest of my life and possible side-effects include obesity and brittle bones.
It wasn't until they told me I wouldn't be able to have children that it really hit me. But when everyone had left the room, I had a really odd experience. I remember feeling intensely light in my body and everything around me was light. A wave of reassurance went through me and I remember saying to my mum and my boyfriend later: 'Don't worry, I'm going to be fine. I'm going to eat properly, I'm going to exercise. I'm going to do absolutely everything I can to get better.'
From that moment I refused to accept the picture the doctors had given me; I was not going to be ill for the rest of my life.
I left hospital a week-and-a-half later and with the help of my boyfriend Rene and the doctors I designed my own programme of rehabilitation, involving positive thinking, exercise and good nutrition.
I was convinced that with the right attitude and approach I would get my strength back.
I started with simple things, such as walking to the bathroom and brushing my teeth, and gradually built up one step at a time. To strengthen my arms I started exercising using cans of beans. I'd do a couple of lifts, then have to stop, but this slowly built up over the weeks.
I made sure I ate plenty of fresh fruit and vegetables, had three solid meals a day, and took an American nutritional product, called Usana — a powerful super-food concentrate tablet — that would boost all my vitamin levels and keep my immune system as strong as possible. I didn't eat meat or drink alcohol. After a couple of months I felt well enough to resume recording my album.
I'd sing one line and then have to rest for half an hour, but slowly I got there.
By the end of 1999, six months later, I was ready to start promoting it. But by this time I was working so hard that I suffered a slight relapse.
DURING early 2000,1 flew to Los Angeles and the night before we began filming my video, my hair started to fall out. I was in the bathroom and it was coming out in handfuls. It was a side effect of the steroids — and stress. I remember just collapsing on the floor crying. It was my lowest point, but I still wouldn't let it stop me.
The next morning I had a wig woven specially for me and had a beauty therapist use specialist make-up to cover up my problem skin. We went ahead with the video, even though I was in a lot of pain and had to sleep four or five times a day.
It was worth all the hard work because my album Higher Than Heaven reached number 15 in the charts, and I proved that I could make it as a solo artist. Back in the UK, however, the first thing I did was to get back to my rehabilitation regime. By sleeping, eating well and exercising, within six months my hair grew back and my skin healed. And month-by-month with healthy living my strength grew and grew.
Finally, by 2002 I had more than halved my steroid medication, I was jogging three times a week and had even taken up kick-boxing again — something I'd tried seven years before. It had a great strengthening effect on my body — but above all it helped me keep mentally strong and positive.
By the end of 2003,1 was able to come off my drugs completely as all my three monthly drug blood tests which monitor Lupus activity or antibodies in the blood had been negative for more than a year.
I haven't had flare-ups since and in April 2004 I was given the medical all clear. As far as I am concerned I am 100 per cent better.
My doctor will never say it is completely cured, Lupus can come and go throughout your life, but I have been told that my recovery is exceptional, and I am convinced I am in more than just remission.
Today, the only remnants of the illness are scars on my face and arms from ulcers and the butterfly rash and, if I don't drink two litres of water a day, the odd twinge from my damaged kidneys.
I am now the patron of St Thomas' Lupus Trust in London, helping to raise awareness of the disease. I have spoken to many sufferers and my advice is always to use your mind. It's the strongest tool you have.
When I was diagnosed, I decided I was going to get better regardless of the diagnosis — and with that mindset anything is possible.
St Thomas Lupus Trust 020 7188 3562
St Thomas Lupus Trust would like to clarify that while lifestyle changes can greatly help Lupus, there is no cure.
A spokesperson says "Kelle is an exceptional person and an excellent Patron- however, how she manages her illness would not work for all sufferers. Lupus is currently incurable but may in some cases go into remission, but it never 'goes away'.
Lupus by it's very nature 'waxes and wanes' and patients often have periods of feeling well. Lupus can be affected by factors such as diet, exercise and stress.
A good diet and exercise can improve how a patient feels, as can reducing stress - which is a known trigger. As for pregnancy.
Our general advice is for lupus patients not to becomepregnant when they are very acutely ill, once over the acute episode they should then discuss pregnancy with their doctor.
Pregnancies amongst lupus patients are very often successful, indeed our own pregnancy clinic has an 80-85 per cent success rate."