Have you ever suffered a bout of flu with its depressing sense of malaise, body-ache and
joint pains? If yes, then you have an idea of what a patient with Systemic
Lupus Erythemathosus (SLE) feels like 24×7. The difference is that Lupus
patients may not have fever, and they do not have the consolation of looking
forward to being rid of the illness in a few days’ time. It is there to stay…
life-long! As a teenage patient says, “I am 18 years old and I was diagnosed
with Lupus at age 7. After 11 years of illness, I can’t even remember what it
feels like not to have it! I start every day feeling like I have the flu.”
Although more than five million people are
known to suffer from Lupus, worldwide, most people have never heard of this
illness. After the famous actress-singer, Selena Gomez, announced that she had
Lupus, a few more may have heard of the illness, but very few know anything
about it. As a result of this ignorance, many have been wrongly diagnosed, and
some have died for this reason. The month of May is Lupus Awareness Month, so
here are some facts about the illness.
The word ‘systemic’ means the disease can
affect many parts of the body — including the central nervous system, blood and
blood vessels, skin and joints, and major organs like the lungs, kidneys, heart
and stomach. Most people develop SLE between the ages of 15-44, and 90 per cent
of SLE patients are women. The illness is NOT caused by a virus, germ or
bacteria, and so it is not an ‘infection’ that one can catch from another
person. Like many auto-immune illnesses, the cause and cure of SLE is unknown.
An auto-immune illness is an allergic reaction of the immune system, where
fighter antibodies (for some mysterious reason) attack one’s own body cells.
Erin Wiley, an SLE patient, explains this well in lay person’s language: “I am
asked ‘What is Lupus?’ repeatedly, and I explain to people that Lupus occurs
when the body is challenged by various viruses and organisms and responds at
first as a normal immune system would by producing antibodies to destroy
invaders and protect the body. In people with Lupus, however, the immune system
sometimes does not shut off its production of fighter antibodies, and this can
result in potentially life-threatening damage and inflammation to major systems
and organs.”
SLE is difficult to diagnose, and often
takes years to diagnose. Many patients are told they have some other illness
when actually they have Lupus. Lupus is a stealthy and elusive ‘wolf’. Jane
Robinson says, “It is fitting that the Latin word for wolf should be ‘Lupus’,
because the wolf in my life is SLE. I am 37; I was diagnosed with Lupus 12
years ago. From the age of 10, I went to my general practitioner with various
symptoms – rashes, joint pain and mouth ulcers. They were put down to my age,
too much sport, not enough sport and even not being able to sweat properly. The
symptoms never presented together nor were they put together to form a
potential diagnosis of Lupus. When I was 19, I had trouble climbing the stairs
at work. My doctor told me that I would probably go on to have arthritis but
was not prepared to take it further and confirm a diagnosis. It was only when I
was 25 that Lupus was finally diagnosed, and that, too, because I was unable to
move at the end of a working day. All the joints in my legs and arms had
swollen.”
At the onset of Lupus, the symptoms are very general, which is
one reason why the diagnosis of the illness is difficult. Here is a list of
some major Lupus symptoms.
Symptoms of Systemic Lupus Erythematosus
Nearly all Lupus patients suffer chronic, excessive fatigue.
95 per cent of Lupus patients suffer achy joints. The most
frequently involved joints are those of the hands, knees and wrists.
90 per cent of patients suffer a low grade fever, especially
during a Lupus flare. Fever during Lupus flares is usually low-grade, rarely
exceeding 102°F.
One of the most visible symptoms of SLE is the skin rash, and
about 74% of patients will display this symptom. However, only 42 per cent may
get the typical ‘butterfly rash’ that sits astride the nose-bridge and on
either side of the nose and shows up as red patches on the cheeks.
71 per cent of Lupus patients suffer anaemia (low red blood cell
counts).
SLE affects major organs in the body. About 50 per cent suffer
kidney involvement.
More than 50 per cent of people with Lupus have some sort of
lung disease.
A third major organ that could be affected in Lupus patients is
the heart.
A fourth major organ that could be affected in Lupus patients is
the stomach. Some patients suffer from inexplicable diarrhoea or excruciating
abdominal pain.
The eyes may also be affected in Lupus patients. Dryness of the
eyes is very common in Lupus patients and may lead to corneal ulceration if not
treated immediately. There could also be haemorrhages in the eyes.
Many patients with Lupus develop painless ulcers in the mouth
and nose at some point in their disease.
About 27 per cent of Lupus patients are reported to experience
hair loss.
Some Lupus patients may suffer whiteness and blueness in the
fingers, called Raynaud’s phenomenon.
Serious brain (cerebral Lupus or Lupus cerebritis), nerve
problems and even strokes occur in about 15 per cent of patients with Lupus.
There may also be other symptoms such as vertigo, severe back
pain (Lupus myelitis), etc.
As in other chronic illnesses, depression is common in SLE.
Sometimes it is directly related to the active disease and sometimes to
emotional difficulties in coping with a chronic illness or to the medications
used to treat it, especially high doses of prednisone.
Described
by the Lupus Foundation of America as “one of the world’s cruelest, most
unpredictable, and devastating diseases”, Lupus is a much misunderstood
illness. Erin Wiley says, “The wolf is one of the world’s most misunderstood
creatures and has suffered greatly as a result. Because of a lack of awareness
of the disease, Lupus patients are also often misunderstood and are accused of
being lazy or hypochondriacs. They are often misdiagnosed or remain undiagnosed
due to the variation in symptoms between patients, and the disease’s
characteristic of alternating periods of active flare-ups and remissions.
Wolves have become marginalised by people’s disregard for their habitat and
needs. Similarly, many Lupus patients feel isolated and overwhelmed by their
disease and become marginalised as a result. Lupus canis, the wolf, is a
symbol of strength, courage and endurance – qualities that patients need in
order to face the challenges of living with Lupus.”
