Good morning all,
This story has nothing to do with Pksns. It does however, point out
the pro and cons of looking for medical resources on the WWW. It also
makes the point that it is important to learn about and take charge of
your own illness...
September 30, 1999
Net helps afflicted man find cure
By CP
TORONTO -- Michael Bonnar is used to being misunderstood.
Everyone -- complete strangers to health professionals -- misread the
painful, leaky boils and abscesses in his armpits, groin, neck and
occasionally his ears that have plagued him most of his adult life.
He was told by the manager of his apartment complex that he couldn't
swim in the pool -- a tenant had complained about his shirtless
appearance. His condition is non-contagious.
Doctors have been equally wrong about his skin disorder, hidradenitis
suppurativa. He has been prescribed drugs that didn't work but caused
severe side-effects. He has had his boils lanced, drained and gouged out
of his body, leaving scarred craters in his skin. Still the flare-ups
persisted.
The 29-year-old figures he can't do much about the ignorance of
strangers. But he has found a way to seek help and understanding -- the
Internet. His experience is a powerful rejoinder to the medical world's
penchant for nay-saying the Web as a source of health information.
"It has made a huge, huge difference," he says.
Two years ago, Bonnar found a motherlode of information about
hidradenitis suppurativa on the World Wide Web. He found other sufferers
too. And, for the first time, he found hope. Suddenly he was telling his
doctors about cutting-edge research on his condition, the current
understanding of the cause of the acne and how to treat it.
Inspired by the experience of others he met in cyberspace, he had a
plastic surgeon remove the apocrine sweat glands under his arms, which
are believed to be the source of the abscesses. That has turned out to
be the best treatment he has had.
Today, Bonnar is the Web master of HIDE International (Hidradenitis
Information Development and Exchange at
http://webhome.globalserve.net/hidecan), which last year had 24,300
electronic visits.
He believes the Web is incomparable for centralizing knowledge about
disorders, for sharing practical care tips, for getting support, for
amassing research information and ultimately for improving the lives of
thousands around the world who suffer from intractable and little-known
health problems.
Not everyone agrees.
Some doctors scold patients who use the Web to become informed about
medical ailments; at the same time, the doctors depend on it for
professional development.
They fear people can't tell the difference between credible electronic
information and the kind that promotes unrealistic expectations or
dangerous medical treatments.
In some cases they are right. Yet patients are crawling all over the Web
in ever-larger numbers.
Now some forward-looking health professionals are trying to transform
their colleagues' notion of this Net worth. In an editorial in the
British Medical Journal, epidemiology professor Alejandro Jadad, chief
of McMaster University's health information research unit, says the
Internet presents an opportunity to strengthen the relationship between
patients and doctors, but not before both change somewhat.
"At some point, patients may have to learn more about their own
conditions than their clinicians," Jadad says. "That's because, for
them, their case is their only case. For the clinician, their patient's
case is just one of many. . . . The ideal would be for the health
provider to look at the well-informed patient as an ally, not a threat."
Jadad believes the future doctor-patient relationship will be a hybrid
of virtual knowledge and face-to-face contact. He is developing a tool
to achieve that happy balance: a Web-based coaching system that patients
can use to find out everything they want about their condition before
they see their doctor.
Designed by patients and physicians, the coaching system prompts
patients to ask questions and then answer them by scouring the Web,
allowing them to learn as little or as much as they choose. The
information will have been tested for scientific validity.
"The hope is that by helping people focus their questions, their time
with the clinician can be spent on what's important," Jadad says.
"About seven clinical trials have shown that patients who are coached on
how to ask questions and then given information relevant to those
questions and to their conditions do much better in the long run."
Louise Kinross would have been thrilled to have such a tool. Five years
ago, she was told that her newborn son, Ben, had Langer-Giedion
syndrome, a rare chromosomal disorder that profoundly affects a child's
physical development.
One of the first questions she and her husband had was if they could
contact other families whose children had the same disorder. They needed
to know they weren't alone.
"We were told we might not want to meet another family because they
might be worse or better off than we were; there's so much variation,"
Kinross says. The couple was also advised not to read medical
literature.
But after 1 1/2 years of intolerable isolation, she wrote to a magazine
for parents of special-needs children and eventually made contact with a
Minnesota mother whose child also had Langer-Giedion.
The two women decided to go online. They posted notes on New York
University's electronic rare-disease registry and added their names to
electronic mailing lists about related conditions. They quickly made
connections with families in 12 countries.
Ultimately they established a Langer-Giedion Web site
(http://www.geocities.com/HotSprings/9308) support group and newsletter
with a medical advisory board.
Today, the world's first database of families with Langer-Giedion
children has been established at the University of Houston, largely
because of Kinross's efforts. This database has become a one-stop
shopping source for researchers all over the world interested in
studying the disorder and looking for affected families. Kinross banks
her hopes of improved treatments and better understanding there.
But for help in coping with her son's day-to-day problems, she reaches
out into cyberspace.
"A doctor doesn't always know the practical information that another
parent does, nor can they give the same emotional support," she says.
Copyright © 1999 The London Free Press a division of Sun Media
Corporation.
Copyright © 1999, Quebecor New Media Limited Partnership.
--
Judith Richards, London, Ontario, Canada
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