Dear Fellow RSD patients:

Some very exciting things are happening with rsd awareness initiatives. The
RSD awareness and education bill is pending in the NJ state senate, right on
the heels of the PA one. This is great news ... hopefully more states will
jump in with similiar initiatives.

A great newspaper piece ran in The Record, of Bergen County, NJ this week --
a large state paper (2nd largest in NJ and 63d largest in the nation). It
was front page full spread layout cover story of Health section.

Some of the other current pending actions include newspaper coverage with
several other newspapers, NJ 101.5 talk radio, NJN cable access, and a broad
scale RSD documentary to be aired on NJN and potential distribution to PBS
affiliates, Discovery Health channel, CNN Health. Exciting things are about
to happen. People in the future will not have to suffer the same ambigious
situation that we have. The letters RSD will mean something to the general
public in the near future!

I have pasted the piece from The Record directly below, as I understand you
must be a registered user to access the article on the paper's site. Here
is the full article ....
__________________________

Tuesday, February 17, 2004

By BOB GROVES
STAFF WRITER

His body healed after the auto accident, but the hurting wouldn't stop.
Months after Joe Testa recovered from an auto accident, the pain in his legs
was still so severe that he seriously considered suicide.

One summer night, Testa left his Northvale home to get doughnuts. The pain
wasn't enough to keep him from driving. But his legs felt like he had jumped
onto sharp spikes that shot up through his feet and out his kneecaps. Red
hot pokers seemed to pierce his back.

On that night, he thought about slamming his car into a tree. Then he heard
a train and headed for a railroad crossing. His plan was to have the train
hit him broadside, not head-on, like the car collision months before that
fractured his back and bruised him head to toe.

"The pain was so excruciating, I couldn't handle it anymore. I just wanted
to end it," Testa, 56, said recently.

Testa was being tortured by his own sympathetic nervous system, the nerves
that normally control involuntary actions such as sweating, blushing,
salivating, and heart rate.

But for some people, an injury - or surgery, stroke, or even cancer - can
make these nerves scream like hot electric guitar strings, long after a
chord is struck. The wound heals, but the hurt burns on, like the throb of a
phantom limb.

This chronic pain and swelling condition, which may afflict as many as 10
million Americans, is clinically known as reflex sympathetic dystrophy, or
RSD. It is also referred to as complex regional pain syndrome, or CRPS,
which is a broader category.

Though not fatal, the condition can be crippling and irreversible if not
caught and treated within the first few months that symptoms appear. If it
is diagnosed in time, RSD can be controlled or even put in remission.
Because time is of the essence, advocates in New Jersey are promoting an RSD
research and education bill to raise public awareness. The measure is before
the state Senate.

Pain can make the body's sympathetic nervous system very unsympathetic.
Testa has another way to describe the lingering attacks of RSD in his legs
and back:

"Remember in the movie 'Misery,' when Kathy Bates slams James Caan's ankles
with a sledge hammer? That's how it feels, or like you're being smashed by
cinder blocks," he said. His inflamed legs turned shiny red, and even a
cotton ball felt like a razor on his skin.

"Almost everybody I've talked to who had RSD, about two dozen people, said
they tried to kill themselves," he said.

Testa swerved down a side street just before he reached the tracks and an
oncoming train that suicidal night in 1996. "I knew from that point I had a
guardian angel," he said.

RSD was long considered controversial, and doctors began diagnosing it only
recently, said Dr. Kenneth Citak, a neurologist at Valley Hospital in
Ridgewood.

"It's a relatively rare condition. For a long time, physicians didn't think
it existed, that these people were crazy or exaggerated, " Citak said.
"For many years, doctors were unable to develop a test for RSD and define
it. They would see someone with a sprained ankle who then had incapacitating
pain for years after. Physicians would look at it and say, 'I've seen dozens
like this who do not develop RSD,'" Citak said.

Now, most physicians accept that, in some cases, the sensation of pain gets
imprinted somehow in the spine and brain even after the physical damage is
repaired, he said.

"We understand it's an abnormal response the nerves have to some injuries.
What we don't understand is why it develops in some people, and others have
the same injury but they don't develop it," he said.
RSD is believed to occur when the sympathetic nervous system sends an
abnormally high number of impulses to the injured site of the body, or when
the system simply begins misfiring on its own. The debilitating pain and
swelling is progressive and can spread to other parts of the body.
The symptoms of RSD appear in stages over three to six months and beyond,
beginning with burning pain, swelling and tenderness, extreme sensitivity,
changes in skin temperature and color, sweating, rapid hair and nail growth,
stiff joints, and muscle spasms. Permanent bone, muscle, and skin damage can
result.

Doctors now diagnose RSD from a patient's symptoms, medical history, X-rays,
and thermography, which measures blood flow to test body temperature
changes.

The condition can be stabilized or stopped if treated early enough. There is
no cure. Treatment includes physical therapy, nerve blocks, and drugs.
RSD is most common among the middle-aged, particularly women, but can occur
in younger patients.

RSD struck Deana Kiser following an accident on an exercise machine in 2000
when she was 29. Kiser, a former runner and businesswoman, fractured her
pelvis and injured her hip and back. Within a week, her feet were too
swollen to wear heels to the office. The pain and swelling spread until she
felt like her legs were on fire, or frostbitten. Eventually, her whole body
felt like she was rolling around on ground glass or covered by bee stings
and battery acid, she said.

Kiser went to two dozen doctors, had three operations, and was bedridden for
months before she learned about RSD on the Internet and finally found a
neurologist who would treat her.

By then it was too late.

"They could have reversed it if I had proper, timely treatment," she said.

"This affects so many people who could be helped early on if they knew about
RSD," said Kiser, of Stewartsville in Warren County. "Instead, they're being
told by physicians that nothing is wrong with them. What happened to me can
be avoided."

Kiser became a crusader for the cause. She joined Joanne
Reynolds-Pachtinger, a Monmouth County woman whose daughter has RSD, in
lobbying state legislators for a bill.

"With RSD, my body is constantly reacting to stimulation that's not there.
It thinks it's being assaulted and is in involuntary panic mode," Kiser
said.
Kiser takes 45 pills a day, including prescription painkillers, muscle
relaxants, antidepressants, and anti-seizure and anti-arthritis medications.
She can walk only 10 minutes at a time and uses a wheelchair when she goes
to the mall. The only time she doesn't feel pain is when she's in physical
therapy in 80-degree water.

"Every part of my life crumbled, layer by layer. This literally destroys a
person's life," she said. "The suicide rates with RSD are appalling. Even
people who know what they're dealing with just lay in bed and no longer do
anything. They give up."

It is crucial to keep RSD patients up and moving once they are treated for
pain, said Samyadev Datta, an anesthesiologist at Holy Name Hospital in
Teaneck, who specializes in pain management.

"These patients must be actively involved. That's the cornerstone of
treatment. That's where physical therapy comes in," Datta said.
But doctors now understand that the dorsal column - a bundle of nerves on a
back part of the spinal cord - may take over the pain sensation process from
the sympathetic nervous system, which can make treatment more complicated,
Datta said.

If RSD has advanced to that stage, a nerve block doesn't always take away
all of the pain, Datta said. This makes early diagnosis all the more
important. "When you have good pain control, physical therapy will keep your
joints active, so you don't have lack of mobility," said Datta, who is
treating half a dozen patients with the syndrome.

"I'm not looking to cure the process. I just want to make it more bearable,"
he said.

Testa, the RSD patient from Northvale, is working hard at keeping the
condition bearable and confined to its early stage. He has had 14 spinal
blocks to numb the nerves and undergoes massage and physical and aqua
therapy several times a week.

The pain cost him his job as a commercial photographer and destroyed his
marriage, he said.

He takes a variety of medications, walks with two canes, and wears a
nine-volt battery box on his back that mildly jolts his nerves to redirect
the impulses. Some days he stays in bed but most times rallies to work as a
part-time mattress salesman.

"I'll be this way for the rest of my life. But I'm very thankful. Without
the help of all these doctors, all these therapists, I'd be in a wheelchair.
I may be able to help people. I don't want a lot more people to go through
this."

For more information about reflex sympathetic dystrophy or RSD, visit
www.forgrace.org or www.rsds.org.

E-mail: groves@...
_________________________________________

To access this story on the paper's website and see full spread with photos,
etc, follow this link: http://www.northjersey.com/ You will be required to
complete a short registration to access the paper/articles, then scroll down
to Health section -- it is front story, cover story titled "Under attack".

To learn more about rsd awareness initiatives throughout different areas of
the nation, and see how you can actively become involved to make a direct
difference for others in the future by creating necessary public visiblity
to rsd, pop into the NAC forum here:
http://forums.delphiforums.com/forgracenac/start

RSD is on the verge of hitting the big screen visibility radar. Everyone
can make a difference!

Best Regards, Deana Kiser (fellow RSD patient and awareness advocate, NJ)

_________________________________________________________________
Find and compare great deals on Broadband access at the MSN High-Speed
Marketplace. http://click.atdmt.com/AVE/go/onm00200360ave/direct/01/