Hi all, some disturbing news .... the web content person at the BCT who made
an exception by loading the RSD story online last week is on vacation this
week. Unfortunately, this means this weeks 2nd part installment will not be
loaded online until she returns to the office.

In the meantime I recieved a word document of the content that ran in the
paper yesterday, 5/31. I will cut and paste below. Will also forward on the
link to the site when it is put online.

Very good stuff - I think the writer did an excellent job in capturing the
essense of RSD struggles and creating awareness within the public. Have a
look .....

By Linda Wondoloski
BCT staff writer
lwondoloski@...

People living with reflex sympathetic dystrophy describe it as painful,
debilitating, frustrating, evil.
It means endless visits to doctors offices, countless prescriptions filled
and refilled. It also may include frequent visits to a gym or clearing space
in a room for exercise equipment. It surely requires countless contacts with
insurance companies over coverage for medications and treatments.

Those with RSD, also known as complex regional pain syndrome, must
restructure their lives to accommodate limited ability, often relying on
others to handle duties they can no longer handle. More often than not, they
have to give up their jobs in order to cope with the pain, movement disorder
and other physical and emotional effects of the condition affecting the
sympathetic nervous system, which can be triggered by an injury or surgery.
It can even lead to suicide.

Diagnosed with RSD in 1988, Suzy Holcomb of Delran has become an expert at
coping. It starts with her attitude.

"I will not let this evil thing take over. I will fight this thing to the
very end," said Holcomb, 54.
And fight she does. She drives, sometimes several times a day, to exercise
in the Olympic-size pool at the Family "Y" of Burlington County in
Burlington City. About three times a week, Holcomb uses the treadmill, flex
bars and weights in the exercise room. Sometimes she goes to the "Y" just to
sit in the sauna to ease her breathing, which has been affected by the RSD.
She traces the RSD to a pencil jab she suffered as a child.

In between household duties, trips to the "Y," church-related activities and
the RSD support group she founded, Holcomb visits "a myriad of doctors." She
also has taken part in RSD and drug studies, including a one-day study in
April involving genetics at the National Institutes of Health in Bethesda,
Md.

Then there are the medications. She takes Topamax and Lorcet to ease the
pain of RSD, Zanaflex to control muscle spasms, Lipitor to manage
cholesterol levels, Tenormin to control her heart condition and Lidoderm
patches to relieve pain on the spot. As backup, Holcomb keeps on hand a
supply of nonprescription-strength Anaprox.

Holcomb also has tried acupuncture and has learned to use imagery and
relaxation techniques to release therapy to ease pain, which can be
triggered by stress. She finds strength and inspiration in her religion and
in the book, "Living with RSDS: Your Guide to Coping with Reflex Sympathetic
Dystrophy Syndrome."

Holcomb always is on the lookout for helpful gadgets. A handled sponge that
holds dish detergent, for example, might also hold shampoo so she could wash
her hair by herself. After a tumble down stairs in 1999, she used a mattress
pad outfitted with 300 magnets to ease pain.

A portable, battery-operated unit that uses a special patch and al-ternating
pulse patterns "helps quell a lot of the pain," Holcomb said. She also has
tried a meilus machine, which uses a robotic arm that presses against skin
and muscles, as a pain- relieving tool.

A key element in handling their condition, say RSD sufferers, is support
from family and friends. Holcomb said her husband, Tom, and sons, Brett, 30,
and Jason, 23, have been "very supportive."
Ursula Weed of Palmyra credits understanding family and friends with pulling
her through the difficult diagnosis period and the treatments she has
undergone.

"A lot of people don’t have that," said the 27-year-old. Since RSD
magnifies pain, those suffering with the condition often are faced with
doubts about their pain.

"I was lucky. I don’t know if I could have made it without them," said
Weed, who lives with her parents, Betty and Frank Weed Sr., her sister,
Sophie and brother, Matt.
Injured in an automobile accident in January 2000, Weed underwent
arthroscopic surgery on her left knee and physical therapy for the pain and
muscle spasms in her neck and back. While waiting for insurance company
approval for an intra-thecal pump — which she gained following a legal
fight and court order and she had two nerve blocks. By then, the RSD had
caused her toes to curl under and turn blue; she was walking on her
toenails.

Implanted under her skin, Weed’s pump containing the muscle relaxer baclofen
came about through the recommendation of her physician, Robert J.
Schwartzman, a professor and chairman of the neurology department at Drexel
University College of Medicine in Philadelphia. Schwartzman sees patients at
Hahnemann University Hospital in Philadelphia.

Schwartzman also treated Weed with the anesthetic ketamine, which required a
three-day inpatient stay at Hahnemann in March. The procedure worked —
Weed was able to move her left foot and wiggle her toes something she had
not been able to do in two years.

Although she knows the ketamine treatment will eventually need repeating and
she still uses the baclofen pump for "pain and spasms off and on," Weed
said, "This is the first time in nearly two years that I can say I feel
good, but I am afraid to say it out loud."

To help stay fit, Weed uses a treadmill and goes for walks with her mother,
sister and 3-year-old miniature poodle, Chloe.

Tabernacle resident Kathy Henson, who developed RSD following an injury at
work in December 1989, pointed to the strain RSD places on relationships.

The 52-year-old has RSD throughout her body, as well as fibromyalgia.
Although Henson, her children and her husband, Joseph Henson Sr., who has
been helpful throughout her illness, taking on household duties, grocery
shopping and attending meetings of the RSD support group she oversees, have
survived the strain, it has not been easy.

Friends, on the other hand, have not been as supportive, she said. No longer
able to take part in many social activities, Henson said, "I have lost a lot
of friends." Henson said she also has struggled with insurance coverage.

To relieve the symptoms of RSD, Henson does physical therapy, takes mild
medications (RSD has caused a sensitivity to drug treatments) and practices
self-hypnosis for pain management. Water therapy is especially helpful, yet
she has been unable to convince her insurance carriers to cover the purchase
of a small indoor pool for her therapy.

"I find my biggest fight is with the insurance company," said Henson.

Echoing that sentiment is RSD patient Beatrice Siravo of Philadelphia.

"It is s so degrading what you have to go through to get treatment," said
Siravo, 47.
Injured in an automobile accident 18 years ago, Siravo’s appeal to
Independence Blue Cross for coverage of ketamine treatment was denied April
22 because the treatment is considered experimental. A patient of
Schwartzman, Siravo wants to undergo the treatment at Cooper
Hospital-University Medical Center in Camden. She plans another appeal.

According to William Ward, a spokesman for Independence Blue Cross in
Philadelphia, the company "does not reimburse for the intravenous
administration of a number of agents — including lidocaine and ketamine
— in the treatment of Complex Regional Pain Syndrome (CRPS), formerly
known as Reflex Sympathetic Dystrophy Syndrome (RSD); these agents are
regarded as experimental/investigational because the safety and efficacy has
not been established in the available published literature."
Ward, who cited lack of FDA approval for these drugs in treating RSD, said
his company does reimburse (depending on the benefits plan) for a variety of
treatments, including implant-able devices, physical, occupational and other
forms of therapy, nerve blocks and nerve-ablation therapies.

Drug costs alone can create a hardship for patients, many of whom cannot
work as a result of RSD. Holcomb, Weed and Henson had to leave their jobs
and now collect Social Security disability benefits. Some drug companies,
however, provide help for patients who have trouble paying for medications.

"For patients in need, we provide access to our medicines through a variety
of programs," said Mona Terrell, a spokeswoman for Ortho McNeil companies
Sentocor, Janssen Phar-maceutica, McNeil Consumer & Specialty Products,
Ortho Bio-tech Products and Ortho McNeil Pharmaceutical. Those who meet
economic guidelines can obtain free or reduced-price medications.

Those with RSD point to a high suicide rate as a result of the condition.

"In adults, the morbidity rate is incredibly high," said James W. Broatch,
executive director of the Reflex Sympath-etic Dystrophy Syndrome Association
of America.

Schwartzman also said "there is a high suicide rate in RSD, but there are no
hard numbers to prove this." As new methods of diagnostic testing and new
treatments are developed, hope may be on the horizon for people with RSD.

Schwartzman, who said he is working on a test to define RSD, conducts
research on the condition at Hahnemann. The physician, who has treated
nearly 5,000 RSD patients during the past 30 years, said ketamine has been
used in anesthesia for years in Germany. He has found marked success
treating some patients with intravenus lidocaine, ketamine and thalidomide
and is developing a derivative of thalidomide that is "100 times stronger
than thalidomide."

Schwartzman is optimistic. "The clinical research I am working on now is to
try to cure this thing. I think we have part of a cure now," he said.

Working in sync with Schwartzman, family physician Philip Getson treats
mostly RSD patients at his offices in Cherry Hill and Northfield. Getson
administers treatments such as ketamine and lidocaine at Cooper and has been
involved in a pilot, pain-management program at the hospital.

The hospital-based treatments often come after other methods have proven
ineffective.

Getson, who said he uses a combination of treatments, listed the treatments
used for RSD. They include physical therapy, occupational therapy (where
appropriate), neuropathic drugs such as Neurontin, anti-depressants because
he said, "every RSD patient has some level of depression," medications to
relax muscles and reduce inflammation (where appropriate), pain medications,
interventional pain management such as nerve blocks, hospital-based
treatments and, as a last resort, intra-thecal pumps with medication for
pain and muscle spasms.

Referring to a fear that surgery aggravates RSD, Get-son said, "It’s just
not true." He said steps can be taken to prevent the condition from
spreading.

In his research, Getson has found thermal imaging an effective tool for
diagnosing and pinpointing RSD. The noninvasive technique employs an
infrared camera, which transmits data about skin temperature to a computer.
The computer converts the data to images that can be displayed in color,
allowing physicians to study variations in heat patterns for clues about the
condition.

Getson and Weed were among those who attended legislative hearings in
Trenton that led to approval in March of New Jerseyan’s Reflex Sympath-etic
Dystrophy Syndrome Edu-cation and Research Program Act.

The measure establishes within the state Department of Health and Senior
Services an RSD education and research program that will include a public
outreach campaign. Supporters hail the legislation as a major step toward
promoting understanding and effective treatment of RSD.

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