Home' Trinidad and Tobago Guardian : May 18th 2013 Contents The most common symp-
toms of lupus, which are the
same for females and males,
• extreme fatigue (tired-
• painful or swollen joints
• anaemia (low numbers
of red blood cells or hemo-
globin, or low total blood vol-
• swelling (oedema) in feet,
legs, hands, and/or around
• pain in chest on deep
• butterfly-shaped rash
across cheeks and nose
• sun- or light-sensitivity
• hair loss
• abnormal blood clotting
• fingers turning white
and/or blue when cold (Ray-
naud s phenomenon)
• mouth or nose ulcers
of America: www.lupus.org
At the age of 29 I believed I had the
world at my feet.
I was making strides in my career
and working on my bachelor of arts
degree, when it all changed in a split
Over a year and a half ago I was diag-
nosed with systemic lupus. It has been
a struggle for me, not only physically,
but mentally and emotionally.
Apart from the sometimes excruci-
ating pain and ever present feeling of
being sick, I look perfectly healthy.
People associate being sick with look-
ing gaunt or some other physical man-
ifestation, but with lupus it s quite the
opposite. You look normal, which makes
it difficult for people to understand the
pain that you are experiencing or the
extreme fatigue you feel.
Sometimes taunts like: "Stop pre-
tending" or "You just being lazy" are
used when I feel lethargy---but that is
when the lupus is flaring.
I do not mind because many people
do not understand what is lupus and
what it involves.
For me some days are good; that is
when the pain is manageable. Some
days are great---that is when I do not
feel sick in any way.
Then there are the other days: the
days I wish I could trade places with
a butterfly and curl up in a cocoon until
the pain subsides.
When the mystery began
As far as I can remember I ve always
had a feeling of being sick, but I could
not explain it. I often attributed it to
the rigours of work.
But then that feeling started to morph
into feeling tired all the time, accom-
panied by incessant, debilitating
headaches and pain in every area of
my body, around 2008.
My knees, legs and ankles would
swell. Everyone would say I was just
gaining weight, which made me even
I knew something was wrong. I just
could not figure out what was hap-
pening to me. The skin on my legs
began to change colour and little red
spots began to appear. They got worse
whenever I was in the sun.
I started to get worried when the
swelling in my ankles lasted more than
a week and I could barely walk.
I visited a number of doctors who
conducted blood tests to determine if
I had rheumatoid arthritis, sickle cell
or even cancer. But all my tests came
back normal. This was the frustrating
part, the not knowing what was going
on with my body.
I remember the day my doctor finally
He wrote lupus on a piece of paper
and handed it to me, saying, "The tests
"This little word is giving you all this
trouble," he said, pointing to the paper.
The room was spinning at that point.
I felt like all my dreams, plans, every-
thing I worked so hard to accomplish
amounted to naught.
I could hear my mom sobbing next
to me. I said to myself, "Be strong, be
strong, be strong. Do not let her see
The doctor said it was not the end
of the world, many people live pro-
ductive lives with lupus.
Like all lupus patients, I also wish
for a cure, but I have promised myself
I will not let it control or define who
a long, productive and successful life.
I feel stronger today than I did back
The medication is slowly stabilising
my flares and I can function almost
I know I will have to live with this
disease, but my friends, family and co-
workers have been my support net and
that has significantly contributed to
my drive never to give up.
Saturday, May 18, 2013 www.guardian.co.tt Guardian
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May is a month dedicated to Lupus awareness and today the Natalie
Affonso Lupus Foundation will host a Lupus Awareness Walk at the
Queen's Park Savannah at 4 pm.
Registration is currently ongoing.
Foundation chairman Joel Basanta said the walk is aimed at highlighting
the disease, since lupus is still misunderstood in T&T.
The Lupus Foundation of America, on its Web site lupus.org, defines
lupus as "a chronic, autoimmune disease that can damage any part of the
body (skin, joints, and/or organs inside the body). Chronic means that the
signs and symptoms tend to last longer than six weeks and often for many
years. Lupus is also a disease of flares (the symptoms worsen and you feel
ill) and remissions (the symptoms improve and you feel better)."
The following is a first hand account of a lupus patient, as told to senior
GML reporter Reshma Ragoonath.
For privacy reasons the patient has requested anonymity.
In lupus, something goes wrong
with your immune system, which
is the part of the body that fights
off viruses, bacteria, and germs
("foreign invaders," like the flu).
Normally our immune system
produces proteins called antibodies
that protect the body from these
In an autoimmune illness, your
immune system cannot tell the dif-
ference between these foreign
invaders and your body s healthy
tissues ("auto" means "self") and
creates autoantibodies that attack
and destroy healthy tissue.
These autoantibodies cause
inflammation, pain, and damage
in various parts of the body.
Lupus is not contagious, not even
through sexual contact. You cannot
"catch" lupus from someone or
"give" lupus to someone.
Seal is one of the celebrities who has lupus and devotes a lot of his time
to raising money for charities that support the disease.
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