RSD ran article today in NJ, Newark Star-Ledger

[Guest guest]

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 sville 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. ph 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

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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