I'm 31, but my life has only just begun; She was diagnosed with the potentially-fatal condition lupus at just 12- but at last the future looks bright for Jayne Blacklock.
LUPUS, a debilitating disease which attacks the immune system, affects tens of thousands of women across the UK.
And despite research into the condition, which has around a dozen different symptoms, thousands of new cases are going undetected.
The disease affects eight times more women than men and is notoriously difficult to diagnose, but charity Lupus UK hope to increase understanding during Lupus Awareness Week.
Until April 21, charity workers and sufferers will be highlighting the symptoms people should look out for as well as giving hope to those affected by lupus with news of the latest treatments.
Today, lupus sufferer Jayne Blacklock, tells of her gruelling battle against the potentially-fatal condition and how, at 31, she has defied the doctors who believed she wouldn't reach her 20th birthday to be owner of a publishing company.
Here, in her own words, is her story.
FOR as long as I can remember - even from my earliest childhood - I always had something wrong with me. Every winter, I had frequent colds and aching joints. I always felt off-colour.
The worst thing was that no-one believed how bad I felt. I was called a hypochondriac by my friends because I was constantly tired. This continued for years and gradually got worse.
When I was 12, I reached the point where I couldn't move my joints in the morning and I had terrible back pains. I was given blood tests, which revealed incredibly high levels of antibodies, and I was rushed to hospital.
At this stage, however, lupus was not diagnosed. In the early Eighties, few people knew the symptoms well enough. Not many doctors knew what it was.
At first, it was thought I had child leukemia and I was given penicillin. I also had some treatment for arthritis involving bright UV light, which I later discovered makes lupus worse.
During the time when the tests were being carried out, I was losing a lot of weight - I was 5ft 3in and only weighed about 4st. My parents felt I wasn't getting real help where I was and insisted I be moved to an immunology unit in a different hospital. By that stage, I had also developed the lupus rash, which looked like a big red butterfly spread across my cheek.
A doctor who recognised the rash took all my other symptoms into consideration and immediately identified my condition.
I was given a kidney biopsy and an appropriate dose of steroids was prescribed. The drugs help the immune system cope with the lupus attack and help to keep the symptoms at bay. But they also have some nasty side effects. Weight gain and muscle wasting are the common ones - and I soon began to experience the weight gain.
Within about a week, my waist had ballooned to 34 inches - although I only weighed 5st - and my face was so bloated I was unrecognisable.
Although I wasn't aware of it at the time of my diagnosis, my life expectancy was short. Nowadays, it's different because the tests can detect lupus quicker and more doctors can diagnose it.
There are 11 different symptoms of lupus and if the doctors can identify nine in any order, then treatment can begin. The condition can't be cured, but it can be treated.
Back in 1983, when I was 13, it was already spreading into my major organs. It can be very serious because it attacks the kidneys, liver and heart.
I had major problems with my kidneys and a heart murmur that wouldn't go away. My parents were told I would be unlikely to live beyond the age of 20.
Their way of dealing with it was to raise money for much-needed research into the condition.
My father took up marathon running to raise money and my mother held coffee mornings in our house, which was in a small village in the Borders.
The whole community rallied round and we managed to raise pounds 500 which, in those days, seemed like a fortune.
My mother also became treasurer of a support charity that would eventually become Lupus UK. I remember being taken to meetings involving round trips of over 100 miles, but it brought me into contact with other sufferers and stopped us all feeling so alone.
Eventually, I was discharged from hospital and, throughout my teens, I was given private tuition at home, paid for by the local authority. I led quite an isolated life because my weak immune system meant that I shouldn't be exposed to any infection.
My two brothers, Stephen and Robin and my sister, Toni, were all younger than me and probably found it strange that their big sister was in her room most of the time.It must have been difficult for them while they were growing up - they didn't understand why I was constantly sick and in bed most of the time.
We're all incredibly close now, though. Stephen is in London working as a landsape architect, Robin is a surveyor in Edinburgh and my sister Toni is in Australia.
My partner, Donald, is a pilot, so I'm used to flying. We live in Glasgow, but I make sure I visit my brothers and sister as often as I can.
Having lupus also stopped me having a lot of friends when I was younger, simply because I was rarely able to leave the house. The friends I did have weren't often allowed to have any contact with me, especially if they were suffering from colds because of my weak immune system. As a result, I was very lonely. I was in my first year of high school but I wasn't allowed to go out in the sun because sunlight can trigger lupus symptoms.
After six months, I went back to school, but only for English lessons. I was too exhausted to do a whole day and had to sleep in the afternoon. I couldn't play any sports for fear that I might fall and make the lupus symptoms worse.
I'd changed from a skinny, confident youngster to a bloated wreck. Other children can be cruel. I was bullied at school and never felt normal. My way of dealing with this was to concentrate on my schoolwork. And because I spent more time with adults than other children, I became mature beyond my years. Lupus is a very lonely disease - you look fine most of the time, so no one can sympathise or see you suffering. I was desperate to find people to talk to who knew what I was experiencing. It helped if I could talk to other people.
Despite all my health problems, I did well at school - and made it to Edinburgh Art College, training in graphic design.
My steroid doses were gradually reduced as I got older, but I still had to be careful to avoid infections.
Depending on the severity of the illness, steroids usually mask the symptoms, but because of the side effects doctors prefer to give low doses.
I have osteoporosis, a brittle bone condition caused by the steroids and they also give you what I call "the moonface effect" very quickly. You always look all puffed up in the face.
I was lucky. I have lovely - and very patient - friends, but quite often I would have to cancel arrangements at the last minute because I was too tired or I didn't feel confident enough to go out.
Lupus symptoms can go away of their own accord, but they can also return without warning and no sufferer is ever completely cured of the condition. The only way to keep tabs on it is with regular blood tests.
Two years ago, when I was 29, after three years free of symptoms and having been gradually weaned off steroids, I finally stopped taking the drugs. Eventually, the lupus symptoms would defeat the steroids anyway and they would cease to be effective.
I am currently considered to be in remission and I feel better. Having children is now an option, whereas before it was unlikely because steroids can cause infertility.
I can go on foreign holiday, although I wouldn't be able to sunbathe. I still get tired, but that's probably more to do with working too hard.
I worked in newspaper design for years, but was always determined to set up my own business - and I would have done a long time ago if I didn't have lupus. A colleague and I decided to work together and running our own business does make me tired, but I'm very careful about any aces and pains. If I think I am overdoing it, early nights are immediately the remedy.
I'm in remission, but I know the symptoms could come back. It's incredible to think that, when I was diagnosed, the prognosis was so bad, but the last time I saw the doctor, he said I was normal. I've waited years for a normal life.
I recently redesigned the Lupus UK logo. Lupus is represented round the world with a butterfly symbol, but it was a static butterfly, spread open like a dead, pinned, hopeless specimen. I thought this conveyed a depressing message.
Although lupus is debilitating and exhausting - and can be soul-destroying - you can overcome it and feel free to fly.
That's why the lupus UK butterfly is now flying.
LUPUS: THE FACTS
WHAT IS IT?: Lupus is an auto immune disease - a form of self-allergy. A lupus sufferer has an excess of antibodies in the bloodstream that attack the body instead of protecting it. The disease can be triggered at puberty, after childbirth or during the menopause, by sunlight, a viral infection, trauma or prolonged use of certain medications.
WHO DOES IT AFFECT?: It is estimated that one in 750 women in the UK suffers from lupus (it is more common in African and Asian groups than Caucasians). The condition is far less prevalent in men (one in nine sufferers are male). It most commonly affects women in childbearing years.
WHAT ARE THE SYMPTOMS?: Lupus is difficult to diagnose because many of the symptoms are so unspecific and can be mistaken for rheumatoid arthritis or multiple sclerosis. The classic symptom is a red facial rash, shaped like a butterfly. Others include: fatigue, joint and muscle pain, listlessness, dry eyes, migraine, hair loss, sudden weight gain, chest pain and a scaly rash on the face, scalp, ears, arms or chest. Accurate diagnosis can be made through blood and urine tests.
WHAT IS THE TREATMENT?: Conventional treatment may be with anti-inflammatories, such as aspirin, anti-malarials, which are helpful to those with skin and joint problems, and steroids, which can the patient can be weaned off in time. Immuno- suppressants, which reduce the risk of infection, can also help. Regular blood tests are required to test antibody levels.
FOR INFORMATION ABOUT LUPUS AND EVENTS FOR LUPUS AWARENESS WEEK:
Contact Lupus UK, St 000James House, Eastern Road, Romford, Essex RM1 3NH (01708-731251)
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|Publication:||Daily Record (Glasgow, Scotland)|
|Date:||Apr 18, 2001|
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