There are a lot of higgledy-piggledy stairs in the award-winning children's
author and illustrator Sue Heap's Oxfordshire cottage, hardly ideal for a
woman who has suffered from rheumatoid arthritis for 15 years. During one
particularly bad phase eight years ago, she could get downstairs only on her
bottom.
“My knees hurt so much I couldn't even walk 300 yards to the supermarket,”
Heap, a former winner of the Smarties Book Prize, remembers. “I couldn't
drive and, even if I made it to the cinema, I couldn't get up afterwards
without holding someone's hand. I remember going out for dinner and having
to use one hand to move the other to pick up a glass. To suddenly not be
mobile was really alarming as I'd always been healthy and very active.”
Heap, 53, is now free of symptoms thanks to “remarkable” drugs that have
dramatically slowed the disease's progress. For the past year she has
injected herself with one of the three anti-TNF drugs that, in July, were
severely rationed to NHS patients by the National Institute for Health and
Clinical Excellence (NICE). It advised that RA patients who failed to
respond to one type of anti-TNF drug should not be offered treatment with
another.
Heap is one of the fortunate 70 per cent who respond to the first anti-TNF
drug they try. Other NHS patients have a 60 per cent chance of improvement
with a second try, an option that might no longer be available.
Heap is slim, bouncy and determined to look on the bright side. She has
several projects on the go - some on display in her studio with a fine view
of the Cotswolds, others in her garden shed. Two new picture books, Fabulous
Fairy Feast and How To Be a Baby (written by Sally Lloyd-Jones) have just
been published. Two of her drawings have been selected for the Jerwood
Drawing Prize, with the winner announced next Tuesday.
These days the only obvious sign of RA is one swollen knuckle on her drawing
hand. Yet before starting the anti-TNF drugs there were days when her hand
and wrist were so painful that she had to wear a splint and could barely
draw. Entries in her illustrated diary refer to the increasing pain and
stiffness in her joints and bouts of tearfulness and frustration. “There
were times when I felt incredibly glum and thought, ‘What is the point?'”
she remembers. “When your hands are sore even simple things, such as feeding
yourself, are an effort. And when you can't even move your duvet you feel
quite vulnerable, alone and strange.”
Within weeks of starting her anti-TNF treatment last August, Heap has
experienced none of these symptoms, apart from occasional fatigue -
something that she thinks is more to do with a tendency to push herself too
hard than to do with her arthritis.
She originally had rheumatoid arthritis diagnosed when she was 37. It was a
big blow for a fiercely independent woman who lives on her own, has always
supported herself and whose livelihood depends on her hands.
She was living in North London when she first noticed that her feet ached when
she got out of bed, and her wrist would sting when she held a book. “My
knees felt odd and I kept falling asleep in the afternoon. Then one day I
tried to turn the ignition key in the car and I just couldn't because it was
too painful. It was terrifying. I couldn't work out what was going on and I
had to get a taxi home.”
Her GP prescribed a painkiller, a muscle relaxant and sulfasalazine, an
anti-rheumatic drug, that slowed down the disease for several years. She
also saw a homoeopath, had regular acupuncture, took cod liver oil, drank
honey and cider vinegar, and cut tomatoes out of her diet, but believes
these alternative therapies made no difference.
The major flare-up eight years ago started during a motorbike tour of Ireland
when she began to suffer the familiar symptoms of aching joints and fatigue:
she found herself heading for the nearest B&B and sleeping for most of
the day.
The inflammation worsened dramatically and for the next nine months she often
was unable to work for several days at a time. “At times I couldn't do
anything except sleep,” she says. “When RA is really bad you feel as if
you're on fire, or as if you're recovering from a fracture.”
“Rheumatoid is such an unpredictable beast”
Her consultant prescribed methotrexate, which proved highly effective when
injected once a week. “It was miraculous. I was giddy with joy because the
pain and swelling disappeared after about a month.”
But in less than six years Heap's response to the drug waned and the
inflammation started again. “I felt very low, because I had seen
methotrexate as the great ‘cure'. Rheumatoid is such an unpredictable beast:
you never know where it's going to hit next. My consultant thought I hadn't
come to terms with the disease and he was right. It took me quite a while.
You go through stages of thinking it will go away, and feeling angry, until
you finally accept it's there.”
Her consultant also prescribed fortnightly injections of the anti-TNF drug,
adalimumab, in combination with methotrexate. Within weeks the inflammation
had gone down and the pain had almost disappeared. These days Heap just gets
the occasional “fizzing” in her hand if she does too much gardening or
ironing.
There is little doubt that her sense of humour and natural optimism have
helped her to cope; so has writing her illustrated diary. She tries not to
think too much about the future, but when she received the first delivery of
the anti-TNF drugs, her diary entry reads: “I was so relieved and happy. But
when I hobbled downstairs to sign for them, I felt quite sad that this was
my predicament for the rest of my life.”
She still has difficult moments, usually when she is tired. “I just hit a wall
and feel a bit low. Then I have to stop. But on the whole I feel lucky to
have had such wonderful care on the NHS, and to have got the right drugs in
time to keep the damage at bay.”
Fabulous Fairy Feast, by Sue Heap (Egmont Press, £5.99). Danny's Drawing Book,
by Sue Heap and How To Be a Baby, by Sally Lloyd-Jones and Sue Heap (Walker
Books, £5.99 and £10.99)
What is Rheumatoid Arthritis?
Simon Crompton
Rheumatoid arthritis (RA), which affects about 350,000 Britons, makes the
immune system attack the body's own tissue, inflaming the joints. It is
often confused with osteoarthritis, the most common type of arthritis, which
usually develops as people get older and joints become worn.
The cause is mysterious, although viral infections, stress and genes all may
play a role. Some of the most recently developed drugs, including anti-TNFs,
modify the disease process itself. Anti-TNF drugs change molecular
processes, inhibiting a protein (the Cytokine TNF) which fuels damaging
inflammation.
Three anti-TNF drugs (adalimumab, etanercept and infliximab) are effective for
about 70 per cent of people with RA. If a patient does not respond to one of
these, he or she has a 60 per cent chance of responding to another. The
cheapest anti-TNF drugs cost £100 for a week's dose. For details: National
Rheumatoid Arthritis Society (rheumatoid.org.uk
). Tel: 0800 298 7650.
SIMON CROMPTON
