Inside Salk - October 2009 - page 16

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Inside SalkOctober 2009
I N S T I T U T E N EWS
Shedding Light on the Latest Ravages
of Polio inAmerica:
TheSalkhas launchedPolioToday.org
a resource for polio survivors intended to raise
awareness of the crippling post-polio syndrome
(PPS), a serious neuromuscular condition
that can strike an estimated 40-50 percent of
people decades after they were first infected
with poliovirus.
TheWorldHealth Organization estimates
there are about 10-20million polio survivors
worldwide. Characterized by extreme fatigue
and renewed weakness or paralysis in the
limbs, PPS is oftenmisdiagnosed because its
symptoms resemble other crippling neurode-
generative diseases. The severity of paralysis
during the original polio infection (decades
earlier) does not seem to play in role inwhether
or when PPS strikes, and the syndrome is
typically gradual in onset.
“I have had patients who had verymild
cases of polio, or don’t even remember having
had polio when they were young, end upwith
post-polio syndrome,” says Dr. Jacquelin Perry,
renowned orthopedic surgeon andworld author-
ity on gait analysis who treats PPS patients at
Rancho Los Amigos National Rehabilitation
Center inDowney, California.
PPSmimics other debilitating diseases,
and because there is no single diagnostic test
to confirm it, it is considered a disease of
exclusion –meaning it requires specialized
testing by well-trained physicians who rule
out all other possibilities to achieve a proper
diagnosis. That diagnostic complexity and
confusion, coupledwith the fact that theU.S.
polio survivor population is now elderly (or
close to it), has relegated the PPS community
to relative obscurity.
“People suffering from PPS seem to exist in
the shadows, far from broad public awareness
of the disease and its terriblemanifestations,”
says Susan Trebach, Salk Institute Senior
Communications Director. “Our goals are to
heighten awareness and understanding of
PPS, encourage people to seek proper diagnosis
and treatment, and facilitate the growth of
online communities of polio survivors around
the world.”
PolioToday.org features video testimonials
from polio survivors who share recollections
of their personal battles with polio when they
were young, their more recent diagnosis and
management of PPS, and how they are coping
with their condition. There is an expert opinion
video page featuring several clips by UCLA
Neurologist Dr. Susan Perlman, a PPS
specialist who explains the cause of PPS
and provides relevant information.
“Polio survivors have searched for a way to
actively connect to one another for years,” says
polio survivor Gladys Swensrud fromSanDiego,
California. “This exciting Salk Institute site,
PolioToday.org, offers not only a forum for the
distribution of important polio and post-polio
related information, but it also creates amuch
needed link for polio survivors worldwide to
connect with one another usingmodern social
networking capabilities.”
Rick VanDer Linden, a polio survivor from
Hemet, California adds:
“The best part of the site is that it’s been
developed just for us. It allows us to commu-
nicate with and learn from one another. It’s
the best thing going on theWeb for the polio
survivor community.”
Since going live in August, with nomain-
stream public announcement of any kind,
the Community section of the site is already
attracting attention as polio survivors, some
from as far away as Australia, have signed up
to participate in various discussions that have
been posted. Under the Emotional Stress and
PPS discussion topic, for example, members
describe the ways they control the anxiety and
depression associatedwith PPS.
“It is amazing to see people openly discuss
their deepest health concerns related to PPS
as well as how they found us in the first place,”
saysMauricioMinotta, the Salk Communica-
tions Director leading the website project.
“It is especially gratifying to receive
comments, either on Twitter or YouTube, from
people who tell us howmuch they appreciate
this new internet resource,”Minotta says.
The Resources page provides users with a
growing list of polio survivor groups around the
country and PPS and polio-related literature
from other organizations such as Post-Polio
Health International, theWorldHealthOrganiza-
tion andRotary International Polio Eradication.
Most of the activity on PolioToday.org to date
has been generated through connectionsmade
on Twitter, YouTube and Facebook.
Salk Institute LaunchesWebsite
for Polio Survivors
The best part of the site is that it’s been developed
just for us. It allows us to communicate with and
learn from one another.
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