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The many faces of lupus

Just when she thought she could put her feet up, relax and enjoy her
first year of retirement, Waterdown District High School’s former vice
principal, Marg McGill, became the unofficial nurse, pharmacist and
taxi driver to her 22-year-old son, Kevin, who was recently diagnosed
with lupus.

In August 2008, Kevin was living the dream: the Queen’s University
graduate was living in Waikiki Beach, Hawaii, attending Hawaii Pacific
studying to obtaining his Masters in Business Administration.

But by the middle of his first semester, he started feeling ill. At
first, doctors believed Kevin suffered from an inner ear infection,
mononucleosis and strep throat. “I became a regular at the one clinic,”
said Kevin of his frequent visits for medical attention.

As his illness progressed, the number of ailments that plagued the
previously healthy young man increased. He started losing his voice and
having problems with his speech, he was fatigued and suffered pains in
his hands and feet.

When doctors in Hawaii suggested he be hospitalized and see a slew
of specialists, that’s when Marg, back home in Aldershot, pulled the
plug on her son’s Hawaiian adventure. “We were at the point where we
said to him, ‘Kevin, you either come home or I come down there,’” she
recalled.

On November 15, Kevin flew home. Within days, he was undergoing
various tests, including kidney and liver biopsies, at McMaster
Hospital.

“His systems were crashing. His vision was going, his voice, he had
fluid around his heart and lungs, his kidneys were failing, his liver,
stomach and gall bladder were all inflamed,” explained Marg.

Doctors diagnosed Kevin with Type 4 and 5 lupus, an auto-immune
disease that causes the immune system to create antibodies that attack
the body’s own tissues.

Diagnosis in hand, Kevin began his journey towards remission, during
which he underwent intense chemotherapy-like treatments that left his
body weak and his immune system susceptible to infections and bacteria.
And as a result, he subsequently contracted shingles, a skin rash
caused by the same virus that causes chickenpox.

Taking a slew of medications to keep his illnesses under control,
Kevin, who now found himself with a lot of time on his hands, began
charting his drugs on a spreadsheet. “Kevin, being a bio-medical
computer grad, has coloured coded all his drug stuff. When they (the
doctors) ask what he’s taking, I just take the page out and hand it to
them,” said Marg.

“For the first little bit, since I couldn’t do anything else, it helped pass the time,” noted Kevin of his drug-tabling project.

Currently in remission from lupus, Kevin still isn’t in the clear:
the disease could flare up at anytime. “Different things can trigger
it. It could come back at any time or never again,” explained Marg.

For the next little while, Kevin will have to learn more about his
body and what he can and cannot do. “That’s one of the hardest parts,”
he said.

“People with lupus are being kept well enough because of diagnostic
tools and the treatments. They are able to work and live a very
productive life,” said Anne Matheson, who has lived with lupus for the
past 50 years and has taken on the role of communications director for
Lupus Ontario.

To better understand his illness and garner support from others who
have already walked a mile in his shoes, Kevin and the McGills have
attended monthly lupus meetings organized by Matheson.

“We are just getting our feet wet with this lupus,” explained Marg
of the family’s knowledge on the disease, also known as “the great
imposter” due to the difficulty in diagnosing it.

While it’s been a learning curve for the McGills, Kevin’s diagnosis
has opened the Aldershot family’s eyes to the importance of funding
medical research for lupus. In an attempt to support their son and the
many others who suffer from the disease with a thousand faces, the
McGills are limbering up to Walk a Block for Lupus.

The eighth annual fundraising event, slated for Saturday, May 9,
will see area residents gather at Bayfront Park in Hamilton and walk
five kilometres – or as far as they can – to raise awareness about the
disease and support for lupus research.

“Because lupus takes on such different characteristics in everyone,
the fundraisers they have are really needed to try and get some type of
cure,” said Marg, adding that the family’s knowledge of the disease has
grown immensely in the past few months. However, “We still don’t have a
good image of what it is and why,” added the former vice principal.

Members of the community can support the McGills’ participation in
Walk a Block for Lupus at Waterdown District High School. Pledge forms
are located at the high school main office, located at 215 Parkside
Drive.

Additional information about the disease is available online at www.lupusontario.org . Anyone interested in participating in Walk a Block for Lupus can contact Matheson at annematheson@sympatico.ca .

About the ‘great imposter’

• Lupus is a life-altering and potentially life-threatening disease.

• In lupus, the body attacks itself causing inflammations which
results in pain, overwhelming fatigue and sometimes irreversible damage
to any system or organ in the body.

• Eighty per cent of people living with lupus are women. Men and children can also be affected.

• There is no cure for lupus.

• Groundbreaking research into the causes and effects of lupus are
taking place in Ontario and Lupus Ontario proudly supports this
research through its fundraising efforts.

LINK: http://www.flamboroughreview.com/news/article/250968