Battling mum aims high for new lupus charity
THE door opens to reveal a pretty and daintily petite woman who ushers me, past a friendly and excitable greyhound, into the neat front room.
Short blonde tufts, heralds of her hair's recovery from a recent bout of chemotherapy, peek out from the rim of her trendy, woollen beanie.
Showing me to a seat, she settles her slight frame into a semi-comfortable, half-reclining position on the couch opposite. Even before she apologises that she's having a bad day today, it's not difficult to see the suffering barely hidden beneath the smiling exterior. Under her arresting green eyes, set against pale, almost translucent features, purplish shadows of exhaustion are clearly visible.
This is 38-year-old Sheira Cliff who lives in Rastrick with husband James and children, Molly, nine, Lily, seven and Etienne, three. She was diagnosed with lupus after starting to suffer symptoms in 2005 following the birth of her third child.
Lupus, a little-known but not uncommon disease (30,000 people are estimated to suffer from it in the UK alone and it is more widespread worldwide than leukaemia, multiple sclerosis and muscular dystrophy) is an autoimmune disorder for which there is no known cure.
In lupus the patient's immune system creates antibodies which, instead of protecting the body from foreign agents such as bacteria and viruses, attack the person's own body tissues. This causes, among other things, extreme fatigue, joint pain, muscle aches and anaemia and can result in the destruction of vital organs. Each affected person will manifest different symptoms making this disease a particularly problematic one to diagnose, especially as it can mimic other diseases such as multiple sclerosis and rheumatoid arthritis.
It is more common in women than in men – 90 per cent of sufferers are female – and can be brought about by sunlight, after a prolonged course of medication, puberty, the menopause and, crucially for Sheira, after childbirth.
"The trigger was when I had Etienne," she says. "I had a Caesarean, which I'd had for the other two births because I've had three really difficult pregnancies, which can be common in lupus. I think I lost about nine pints of blood and I just never really recovered. I had a breakdown that Christmas, I just felt so ill. I went back and forth to the doctor's for six months afterwards. When my hair fell out in April, they thought it was the trauma of having a baby, but just as a precaution they took blood tests which showed antibodies in my blood and that's when they finally referred me to a dermatologist." Hair loss can be a symptom of lupus.
Sheira, whose name means Princess in Hebrew, was eventually diagnosed with systemic lupus erythematosus (SLE) in 2007. This form of the disease – there are three types, discoid, systemic and drug-induced – is difficult to identify because it does not typically develop rapidly, but develops slowly and evolves over time.
Symptoms can come and go and it can take time for the disease to show up in blood tests, which one time can be positive and the next be negative again. It can take months or even years for enough symptoms to show up before an accurate diagnosis can be made. "I had blood tests every month," she says. "They'd take 12 at a time to test my antibodies, my white blood cells and my anti-nuclear antibody count (a specific antibody which 95 per cent of SLE patients test positive for). I'm still having the tests now."
Sheira has an allergic reaction to medication specific to lupus, such as anti-malarials, but still takes a staggering 50 drugs a day, most of which are painkillers for the other syndromes which can co-exist with SLE and which she suffers from. These are rheumatoid arthritis, an inflammation of the joints where they become swollen, stiff and painful; Raynaud's phenomenon a painful disorder in which blood vessels contract, cutting off blood supply to the extremities; and Sjogren's syndrome, a condition in which the eyes become excessively dry due to the impairment of the body's defence system, causing the destruction of glands producing lubricating secretions.
Each of these syndromes can have their own devastating consequences. Sheira has just undergone an eye operation to cauterise her tear ducts as it emerged that her eyes were so badly damaged by the dryness that she was at risk of going blind. The surgery was only partially successful and another operation has been scheduled for October. Every three months she undergoes a five-day course of intravenous drugs to counteract Raynaud's. The last time this happened, her veins had shrunk to such an extent that venous access was impossible.
She shows me her arm, mottled with bruises, where the nurses tried nine times to find a vein before having to concede defeat and employ a less satisfactory method of infusing her with the medication.
Other debilitating effects have also to be controlled. "I have to take sleeping pills at night because I can't sleep with the pain." Sheira has chronic widespread pain in her muscles, joints, ligaments and tendons. "I have to take calcium with the steroids because of the risk of osteoporosis. I also take anti-depressants because one of the main issues with lupus is depression. Lupus interferes with the brain. You have really bad memory loss and severe headaches and seizures."
Not surprisingly, Sheira suffers from chronic fatigue, another SLE symptom. Her husband James, 29, who makes train name plates from home so he can look after her, takes over the care of the children and household when she is too ill. She cannot walk more than 50 yards now and has a wheelchair when she goes out. "I do have my better days," she says. "But I don't ever have a pain-free day. I don't go out very often because I get so tired. It's difficult if the children want to go out and I can't take them. Your social life just goes out of the window."
Sheira has been referred to a lupus clinic in London, the only one of its kind in the UK. "They're discussing treatment with me because I have such a sensitivity to drugs (associated with lupus). I've had four bouts of chemotherapy which haven't really worked."
Such an all-encompassing and debilitating disease in one still so relatively young seems all the more lamentable when taking into account Sheira's pre-lupus lifestyle.
"I used to be quite physical. I was an outdoor pursuits instructor when I was in my early twenties and I really miss doing that. I can't do things like that any more, obviously. I used to teach caving, climbing abseiling, canoeing and surfing. I travelled around working in Somerset and Devon."
Her adventurous spirit, however, lives on. As part of a drive to set up a charity to raise awareness of lupus, Sheira is planning a sponsored 1,000ft skydive at the end of November. "I'm in London for possibly more chemo in October," she says. "Then hopefully I'll do the jump at the end of November. If I'm OK I'll be doing it as a tandem jump. I don't have to use my legs so I should be OK really."
Also, having worked as a gig promoter for 10 years before her illness forced her to quit, she organised a music fund-raiser in Leeds on August 23 in which eight bands took part. "I have a very big musical passion," she says. "I used to really enjoy helping local bands out, promoting them. We used to run gig nights twice a week in Leeds and Manchester. I used to sing and I actually sang five songs at the fund-raiser. It was really good! We took 200 on the door. But I was absolutely shattered from all the organising. I slept for about three days afterwards!"
Sheira plans to establish the charity with a friend from Cambridge who she met on the lupus circuit. "Her daughter has lupus," she explains. "We're hoping to set up the charity to go round and educate the medical profession about lupus from the patient's point of view. Most hospital staff, doctors and nurses, don't know what lupus is."
Recent newspaper articles on Sheira have highlighted the disease, resulting in her receiving a flurry of emails from people who said they felt alone until they read about her struggles.
"At the beginning I felt very alone," she remembers. "I knew nobody with lupus, I knew nothing about the disease and I don't want anyone to feel as alone as I felt. So it means a lot that I've helped a few people who have felt really lonely. To help just one person means the world. It's good to raise money, but on a personal level, reaching out to people means so much more."
As I leave, the greyhound spark out catching rabbits in his sleep by the door, I reflect on what a caring and cared for person Sheira is. She is headed, exhausted, for bed to get a few hours sleep before the children come home from school.
"They put little letters by the bed saying: I love you. Get well soon," she tells me. "Every night when I go to bed there's a note under the pillow. Almost every day I find some little pictures or notes."
You get the feeling that if love and goodwill could ensure good health, Sheira would have it in spades.
Information on lupus can be found at www.uklupus.co.uk.
To sponsor Sheira's 1,000ft skydive, go to www.justgiving.com/Sheira-Cliff. Anyone wishing to contact Sheira on lupus-related matters can email her on m4rion71@aol.com.
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Wednesday 08 February 2012
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