A little-known affliction attracts new awareness

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A little-known affliction attracts new awareness

Thousands endure unremitting body pain.

For Cohen, a Philadelphia police officer in the mounted unit, things were

bad enough when she was tossed off her horse - she crunched her spine, injured a

kidney and broke some teeth.

But here she is, 19 years later, suffering. Her original injuries morphed into

another problem, one that has come to define her life: pain.

Cohen has complex regional pain syndrome, commonly known as reflex sympathetic

dystrophy (RSD), a condition that affects thousands and perhaps millions of

Americans, but remains little known. To remedy that, Gov. Rendell signed

legislation last month calling for the state Health Department to provide

greater public education about it.

Similar bills have passed in Delaware and been introduced in New Jersey and

Illinois. Although the measures have no money attached, advocates are pushing

for anything that will raise RSD awareness.

" You say you have RSD, and you might just as well say ABC, " said Deana Kiser,

33, of sville, N.J., who fractured her pelvis and then developed RSD

symptoms in 2000 after slipping on a cross-trainer machine at her gym. The years

since have been filled with surgeries and heavy-duty painkillers, depression and

frustration - but most of all, torment.

" I am in absolute pain, " she said.

RSD is a chronic neurological condition caused by an abnormal response of nerves

to a trauma or injury, ranging from something as minor as a stubbed toe or

sprained ankle to something as major as a broken leg or gunshot wound.

The condition soon escalates into what Dr. J. Schwartzman, professor and

chairman of the neurology department at Drexel University College of Medicine

and an RSD expert, describes as " total body pain. "

The pain is constant, burning and debilitating. As it did in Cohen's case, it

can jump from one part of the body to another, and it can be exacerbated by heat

or cold or the slightest sensory stimulation: a gentle breeze, the touch of a

bedsheet, a drop of water.

Treatment includes pain-management and other medications, physical therapy, and

most recently, a kind of " pain chemotherapy " that Schwartzman believes can help

reverse RSD.

Schwartzman saw his first RSD case, the teenage daughter of a nurse, in 1982.

Since then, he said, his RSD patient count has hit 5,000, every one of them in

" very, very severe pain. "

" The horror stories are all real, " he said.

Horror, as Kiser describes it: pain in her legs so bad it is as if " I am on the

ground rolling around in chopped glass. "

Result of car accident

Adds Rick Ulrich, 41, former Northumberland County coroner who suffered a

concussion and knee injuries followed by RSD pain after a tractor-trailer ran

over his car in 1997: " When I would get in the shower, the water felt like

little beads of acid on my legs. "

And Cohen, 56, of the city's Roxborough section: " Your skin feels like it's

burning... like an electrical fire and it won't go out. "

The pain, usually out of proportion to the initial injury, sends patients from

doctor to doctor on a quixotic quest for relief. Along the way, as the pain

continues and their lives become more and more defined by it, they often develop

depression and other psychological problems.

" You just can't function, " said Ulrich, who eventually gave up his county job

and now walks with a cane. " You can't work, you can't sleep, and it puts a big

strain on the family. "

While pain specialists increasingly are familiar with RSD, Schwartzman believes

many doctors have been slow to recognize it. " A lot of doctors really had a

problem believing that you can twist your ankle and have total body pain, " he

said.

And RSD patients, often accused of being hypochondriacs or attention-seekers,

are known to be difficult and frustrating to treat.

" They are very demanding because they hurt, " Schwartzman said.

Gettysburg veterans

RSD has had many names over the years, the earliest being " causalgia, " which was

coined by Dr. Silas Weir of Philadelphia. , considered the

father of modern neurology, studied and practiced medicine at Jefferson Medical

College.

At the outbreak of the Civil War, he was placed in charge of the city's 400-bed

's Lane Hospital for nervous diseases. There he studied the wounds and

subsequent nerve pain suffered by soldiers who had fought at Gettysburg in 1863.

" Under such torments, " he wrote at the time, " the temper changes, the most

amiable grow irritable, the bravest soldier becomes a coward, and the strongest

man is scarcely less nervous than the most hysterical girl. "

Early diagnosis seems critical. And that is part of the impetus behind the

legislative push for public education.

Spokesman McGarvey of the Pennsylvania Health Department said the state

would do what it could to comply with the RSD awareness law.

But McGarvey has no illusions about the cash-strapped department embarking on a

major outreach initiative.

" We will do our best, " he said, citing brochures, fact sheets and RSD

information that can be posted online, " but don't be looking for a

multimillion-dollar campaign. "

Jim Broatch, executive director of the RSDS Association of America, urged the

state to find some money because RSD is a major public health issue.

" If there is not early detection and treatment, this could cost hundreds of

thousands of dollars to treat, " he said.

Love & God Bless!

/Wolf~President

I'm diagonally parked in a parallel universe.

" Therefore encourage one another and build each other up,

just as in fact you are doing. "

1 Thessalonians 5:11

Now as I always say this at the end of my e-mails:

IF GOD BRINGS YOU TO IT.

HE WILL BRING YOU THROUGH IT.

This has became my philosophy.