Hi all -- writing to share some news here in NJ; We are really on a roll
here with rsd public awareness. This piece (below) ran this morning in the
state's a largest paper, Star-Ledger, which is also the 16th highest
circulated paper in the US.
Requires quick registration to the site, and can be found on this url --
http://www.nj.com/search/index.ssf?/base/news-5/1079508672313360.xml?starledger?\
nnj
"Measure lends support to this with nerve disorder", 3/17.

Alternatively I've also copy and pasted the content below. Enjoy!
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Measure lends support to those with nerve disorder
Senate panel clears bill on reflex sympathetic dystrophy syndrome

Wednesday, March 17, 2004

BY ANGELA STEWART
Star-Ledger Staff

For Sharon Weiner, it all started in her hands.

"I was dropping things. I couldn't even hold a pen. It hurt to write," said
the Bridgewater mother of two.

Doctors initially thought Weiner, 44, had carpal tunnel syndrome, the
repetitive-motion injury that afflicts the wrists, hands and arms. She ended
up with a brace on her right arm.

"That only made it worse. I was walking around for months in excruciating
pain with a bright purple-red swollen hand," she said.

What Weiner actually had was something she had never heard of -- reflex
sympathetic dystrophy syndrome -- referred to by its initials RSDS. The
condition, which some say may affect as many as 10 million Americans, is
also called complex regional pain syndrome. It is a debilitating and
progressive nerve disorder characterized by severe, burning pain,
pathological changes in bone and skin, excessive sweating, tissue swelling
and extreme sensitivity to touch.

Strangely, it can start with something small, like stubbing a toe or
spraining an ankle.

For Deana Kiser of Stewartsville in Warren County, her RSDS symptoms started
in 2000 after she was injured on an exercise machine during a gym workout.

"Everything I was complaining about was a textbook case -- the pain, the
feet swelling. It is unbelievable and unforgivable that the medical
community missed it," said Kiser, 33, who underwent three surgeries and saw
more than 20 doctors before she found a neurologist who recognized the
condition and treated her.

With RSDS, the body's nerves have an abnormal response to injury, with the
sensation of pain being felt even long after the physical damage is
repaired. The amount of pain suffered is usually way out of proportion with
the injury, and it ends up spreading to other parts of the body.

People suffering from the little-known condition, along with their loved
ones, recently appeared before members of the Senate Health, Human Services
and Senior Citizens Committee in Trenton to urge passage of a bill that
would raise awareness of RSDS.

Sponsored by Sen. Joseph Palaia (R-Monmouth), the legislation (S-261) would
create an education and research program on RSDS within the state Department
of Health and Senior Services.

The bill, which does not specify a dollar amount for any programs, was
unanimously passed by the committee and is now up for a vote by the full
Senate.

"They are not asking for a million dollars here. What they are looking for
is awareness of a really serious problem," Palaia said.

Mackenzie Pachtinger, 23, of Tinton Falls ended up with RSDS following a car
accident four years ago that left her in excruciating pain. She was
initially in a wheelchair, but says she can now walk on her own, thanks to
an intensive regimen of physical therapy and medications that help her cope
with the pain.

"It's permanent, but if you catch it early, it won't spread and you may not
have complete body pain or you may not have to turn your entire life
around," she said.

It was her mother Joanne who reached out to Palaia about the condition and
who testified passionately before the committee, urging it to pass the bill.

"I found more people outside of New Jersey who knew about it than inside the
state," she said.

There is a lot of misdiagnosis associated with the condition, according to
Patrick Foye, assistant professor of physical medicine and rehabilitation at
the UMDNJ-New Jersey Medical School in Newark. He said many doctors who have
never treated a case can easily mistake it for other conditions, including
tendinitis or bursitis.

"Many patients with this condition have seen multiple physicians and have
been told that it's all in your head or are given no explanation when this
is a known medical phenomenon," he said.

Diagnosis is usually made based on symptoms, medical history, X-rays and
changes in body temperature. The earlier the diagnosis, the better patients
generally do. There is no cure, but quality of life can be improved, doctors
and patients report, with physical therapy, nerve block injections and
drugs.

Weiner, the Bridgewater mother, was finally diagnosed in 1997 after going
from doctor to doctor. She now runs a support group and wants others to know
that help is out there.

"Between all the medications you have to take and the pain, it is a very
difficult package to deal with," she said.

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