Tuesday, May 16, 2006

Trauma to hands or feet leads to lasting pain

NJ.com, originally uploaded by rsdscrpsnews.

Trauma to hands or feet leads to lasting pain

Tuesday, May 16, 2006

I was diagnosed with RSD after an injury to my arm. The pain is very severe. My fingers are stiff and painful, and there is pain in my wrist, arm and elbow. Can you give me more information about this problem, which I had never heard of before now?

Reflex sympathetic dystrophy is part of a disorder called "complex regional pain syndrome." The cause of this poorly understood condition is not known. It is a malfunction of a part of the nervous system that usually starts after a traumatic event to the hands or feet. This event can be a sprain, dislocation, fracture, crush injury, laceration or surgical procedure. The syndrome also has been associated with medical conditions such as diabetes, multiple sclerosis, stroke, and heart attack.

Complex regional pain syndrome is uncommon. Many cases are misdiagnosed for extended periods of time. The symptoms typically begin a few days or weeks after an injury, and include severe throbbing or burning pain, swelling and changes in skin color, temperature and moistness. The skin over the affected area becomes very sensitive to even light touch. In many cases, the muscles and bones are eventually affected.

Psychological symptoms, including depression and anxiety, are common. The symptoms of complex regional pain syndrome persist long after the initial injury should have healed.

Making the diagnosis of complex regional pain syndrome can be a challenge. A detailed history and physical examination are often the best tools. X-rays, bone scan, nerve blocks, MRI, and certain other tests can sometimes help.

The treatment of this condition is complex. Each case is treated according to the special needs of the patient. Usually, treatment includes a team approach involving a physical therapist, pain specialist or anesthesiologist, orthopedist, psychiatrist, occupational therapist, physiatrist and the patient's family physician. No one treatment has been shown to be more effective than others.

Some of the medications used are painkillers, including nonsteroidal anti-inflammatory agents, topical anesthetic creams, narcotics, antidepressants, certain anticonvulsants and clonidine. Other treatments include transcutaneous electrical nerve stimulation, invasive spine stimulation techniques and nerve blocks.

The long-term outlook for people with complex regional pain syndrome is mixed. Milder cases may resolve over time, while more severe cases can progress to produce crippling changes. Hopefully, future research will lead to the development of more effective therapies.

For more information, contact the Reflex Sympathetic Dystrophy Syndrome Association of America at (203) 877-3790 or go online to www.rsds.org).

Write to Dr. Dennis Cardone, at UMDNJ-Robert Wood Johnson Medical School, Department of Family Medicine, 1 Robert Wood Johnson Place, New Brunswick, N.J. 08903. Or e-mail him at askthedoc@umdnj.edu.

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Sunday, May 14, 2006

JALC students graduate

The Southern.com, originally uploaded by rsdscrpsnews.

JALC students graduate

by jason lee, the southern

CARTERVILLE - A howl of a graduation ceremony took place Friday night at John A. Logan College as about 250 students, and one furry friend, received diplomas from the institution in Carterville.

Highlighting the ceremony was 27-year-old Kelly Stephenson, whose support dog, a black and white Great Dane named Emmie Sue, participated in the processional just as she had assisted Stephenson throughout her four years at John A. Logan.

Each day the dog carried textbooks on her back in a specially designed harness for Stephenson, who has degenerative disc disease and reflex sympathetic dystrophy syndrome.

Stephenson, of Lockport, received an associate's degree in tourism management and she plans to enroll at Southern Illinois University Carbondale in the fall.

"She always carries my books," Stephenson said of her pawed pal, who wore a small graduation cap. "Since I'm graduating today, she's graduating with me."

While Emmie Sue was "a little bit nervous from the music," Stephenson said the dog settled down and having her take part "was a lot of fun."

"This wouldn't have been possible without her," Stephenson said.

Meanwhile, families and friends packed the gymnasium for the college's 37th annual commencement ceremony. Some 971 students qualified to graduate this year.

John A. Logan College President Robert L. Mees, who presented the diplomas, praised the students for their commitment to learning and reminded them that "education is a lifetime process."

"I would like to congratulate you on a job well done," Mees said. "This is a significant step in your lives."

Honored with the college's distinguished alumnus award, Robert Perkins of Southlake, Texas, said his experience at John A. Logan "allowed me to gain academic and real world knowledge at the same time." Perkins oversees a hotel management company that includes 30 properties.

"My challenge to you is to remain committed to action," Perkins, a 1975 graduate, told the students. "I believe choice, not chance, determines your destiny."

Jennifer Blair of Makanda was honored as the ceremony's student speaker. Blair graduated with a perfect 5.0 grade-point average and received an associate's degree in arts and science.

"As graduates of John A. Logan, we have learned that there's a trailblazer in each one of us," Blair said to her fellow alumni. "Tonight is not an ending for any of us. It is a chance to begin again."


(618) 529-5454 ext. 5138

Published on: Saturday, May 13, 2006 6:00 AM CDT

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Thursday, May 11, 2006

‘I don’t feel like having skin today’

‘I don’t feel like having skin today’

Bucks County Courier Times

Carol-Ann Darnley hates all things soft, fluffy, silky, satiny, downy. She can only wear sweat suits if they’re fleece-side out. A dainty handshake sends her skin screaming. Cat fur feels like flames licking at her legs.

“I can’t stand it,” she said. “Sometimes I say, ‘I don’t feel like having skin today.’ ”

This is how the 38-year-old Middletown woman has lived for 10 years, ever since she injured her shoulder pulling a patient’s hospital bed out of an elevator.

She is lucky, though. She was diagnosed with reflex sympathetic dystrophy about two months after her injury. Most people who suffer from the chronic neurological disorder see an average of five doctors before they are diagnosed, experts say.

The condition, also known as complex regional pain syndrome, typically develops after an accident, injury or surgery where the bone or soft tissue doesn’t heal normally, allowing nerves to misfire, sending constant pain signals to the brain.

An estimated 200,000 to 1.2 million Americans have RSD, but experts say the numbers are likely higher because it’s invisible, often hard to diagnose and most doctors know little about it. RSD is also controversial because some in medical circles consider it a psychiatric condition.

“It mostly gets blown off and people go off in the sunset,” said Dr. Philip Getson, a family doctor recognized as an RSD expert. He treats Darnley and has a waiting list of patients seeking help.

No cure exists for RSD, only pain management. The most successful treatment — where patients are placed in a drug-induced coma — is experimental, not covered by insurance and available only in Germany, RSD experts say.

It’s the route that Darnley hopes to take.

The first suspected cases of RSD were reported among returning U.S. Civil War soldiers, said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association in Milford, Conn. Today, the National Institute of Neurological Disorders and Stroke, a part of the National Institutes of Health, supports and conducts research relevant to RSD.

The controversy surrounding the disorder lies in diagnosing it, which relies chiefly on a detailed clinical patient history. But many of the symptoms overlap other conditions. A seemingly minor injury can cause it. The only diagnostic test available is thermal imaging, Getson said.

The lack of objective tests for RSD is problematic and leads to the perception the disorder isn’t real.

“Because we can’t take a picture of it, it must not exist,” Getson said.


Complicating matters is that few doctors specialize in RSD, and fewer have a working knowledge of it, said Dr. Robert Schwartzman, chairman of the neurology department at the Drexel University School of Medicine and a longtime RSD researcher. His patient wait list is backlogged almost three years.

Schwartzman blames medical schools, which do little to teach students about the subtleties and nuances of pain. “The findings are obvious,” he added. “Anyone who doesn’t accept it is an idiot. If you don’t know what [RSD] is now, it’s pretty much like the world is flat.”

When Darnley suffered her shoulder injury, she thought she tore her rotator cuff. Within minutes, her entire arm was swollen. In the hospital’s emergency room, the doctors took X-rays and put her arm in a sling. Later, she saw an orthopedic surgeon who did an MRI scan. Again, her results were normal.

Ten days after she was injured, Darnley said she was at work when her left hand and arm turned colors. “Literally, my fingertips would go black,” she said.

In the office of an orthopedic surgeon, her left arm and hand started turning a mottled dark purple. Later tests confirmed the surgeon’s suspicion of RSD.

Since then, Darnley has endured 76 treatments to temporarily relieve the pain. The pain has spread throughout her body, including her internal organs, she said. She also spontaneously breaks out in “hot spots,” red welts that feel like brush burns.

“That is why I need to go to Germany to put me in remission,” she said.


Over the last 18 months, severe RSD suffers have traveled to Munich for a treatment in which the patient is placed in a five-day coma using massive doses of ketamine, an anesthetic that prevents the brain from processing sensory input. The drug is most commonly used on animals, but also has select human use; in large doses, it has psychedelic effects.

“They all come back better,” added Getson. who said a half-dozen of his patients had the treatment.

An estimated 30 percent to 40 percent of patients emerge from the coma pain free and no longer need pain medication, said Drexel’s Schwartzman.

Once back in the United States, some patients require ketamine booster shots. Otherwise the pain could return, Getson said.

Modified versions of the experimental procedure involving far lower doses of ketamine are available at Cooper University Hospital in Camden and Hahnemann Hospital in Philadelphia. The experimental treatments cost the same here and in Germany — about $25,000 — and commercial health insurance doesn’t cover either treatment.

About 70 percent of patients who undergo treatment in the United States also see great improvement but typically for only three to six months, Schwartzman said.

That is one reason why Darnley wants to take her chances in Germany, hopefully sometime this summer. She describes the constant pain as debilitating and unpredictable.

“I can’t stand to have the hair grow [on] my legs,” she said.

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com.

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Wednesday, May 03, 2006

Crowded race in 42nd District

Crowded race in 42nd District

Health care, schools top issues in Assembly race


SACRAMENTO - It's a crowded scramble in the Assembly's 42nd District race, as five Democrats, two Republicans and a Libertarian are seeking to replace outgoing Assemblyman Paul Koretz, D-West Hollywood, in the June primary.

But the district has traditionally been considered one of the most liberal in the region, with registered Democrats outnumbering Republicans by a 54-21 margin.

And among the five Democrats, two have emerged as likely front-runners based on fundraising and endorsements: former Los Angeles City Councilman Michael Feuer and West Hollywood Councilwoman Abbe Land.

Feuer served as a councilman representing much of the same territory from 1995 to 2001, then left the council after an unsuccessful bid for city attorney. Since then he has been working in private law practice as a litigator and teaching law and public affairs at University of California, Los Angeles.

But he is eager to jump back into public service.

"For me there's nothing more important than making a big impact," Feuer said. "Life is very short and the opportunity to serve is extremely meaningful to me. I just can't sit on the sidelines."

If elected, he would first work on improving the education system, with efforts to reduce class size, increase the number of teachers and improve training for teachers and principals, including establishing principal academies around the state. He would also like to reduce tuition at community colleges.

He would like to write legislation to provide health insurance for uninsured children, and supports the state-run single-payer health care system proposed by Sen. Sheila Kuehl, D-Los Angeles.

He would help transportation in the Los Angeles region by seeking funding to provide synchronization for the city's traffic light system.

One way to help pay for some of the improvements would be through a split roll property tax, where businesses are charged higher property tax rates. He would also like the state to increase its tax collection efforts and reduce tax loopholes.

Abbe Land is a councilwoman and former mayor of West Hollywood, and co-director of the Los Angeles Free Clinic, which provides free medical and dental care and social services at three sites around the city.

Health care is her biggest interest and if elected she would work to support Kuehl's single-payer bill and other efforts to improve the state's health care system.

"Health care is an issue I've been involved with for the last eight years," Land said. "I want to go to Sacramento because so many of the critical decisions affecting health care are made there and I want to take the expertise I have to make a difference."

While she doesn't support efforts to break up the Los Angeles Unified School District or submit it to mayoral control, she does believe the board needs more members, and thinks they should serve full-time to help deal with the size of the district.

On transportation, she would support a bond measure to provide more funding for mass transit. She would also like to continue improvements to the 405-101 freeway interchange, and further synchronize the transit systems around the region.

She supports a split roll tax system, but also thinks the state needs to review the tax incentives it has authorized over the years to see if they are still needed. If not, she says, closing them could represent a chance to save some money.

Cynthia Toussaint knows she's an underdog in the race, but she doesn't mind - she's been an underdog most of her life.

At age 21, she was an aspiring ballerina when a leg injury triggered an intense pain that eventually spread throughout her body. She was finally diagnosed with reflex sympathetic dystrophy, a neurological syndrome characterized by chronic pain.

Now in a wheelchair, Toussaint still struggles with constant pain, though usually not as severe as it once was. She has dedicated herself as an activist for issues of chronic pain and health care. She founded her own nonprofit organization, For Grace, named for the daughter she and her longtime partner John Garrett could never have, to help women struggling with chronic pain.

She decided to run for Assembly after Gov. Arnold Schwarzenegger last year vetoed a bill that would have created a state program for RSD awareness and outreach.

"I'm always ready for, and loving, an uphill climb," Toussaint said. "When I go to meet the voters, they like me because I'm not a quote-unquote politician. I come from a place of great passion."

If elected, trying to get that bill passed would be one of her top priorities. She would also work on other issues related to chronic pain and health care. She would like to reform the health care system and supports Kuehl's single-payer plan.

On other issues, she would like to abolish the death penalty, supports abortion rights and medical marijuana and favors the right of physician-assisted suicide.

Mark Gonzaga, who makes his living in real estate, believes he has a good chance even though he hasn't raised much funding.

"Being able to make a difference is why I'm running in this race," Gonzaga said.

Gonzaga is an author from West Hollywood who makes his living buying and selling real estate, but also teaches and produces a television show on environmental issues for local cable.

Gonzaga would like to see the suspension of executions in California. He would like to expand animal rights, with additional criminal penalties for cruelty toward animals. He also supports clean money public financing of campaigns.

He would also like to amend the "three strikes, you're out" law so that it applies just to violent criminal offenses.

Eric Fine is running primarily to advocate for the legalization of marijuana and other drugs, not just for medicinal purposes but recreationally.

He said he started using marijuana recreationally in 2000, but said he now has diabetes and the drug helps him deal with nausea induced by some of his medications.

He has worked with advocacy groups to support legalization of marijuana and also supports legalization of all other recreational drugs, believing people should have the right to decide for themselves and that it would lessen drug-related crime.

"There's a lot of crime on the streets right now," Fine said. "People are going to get their drugs of choice whether it's legal or illegal. Right now it's dangerous."

Besides marijuana legalization, he would also like to work on redistricting and legalizing gambling.

Fine makes his living by owning and managing property in Beverly Hills and Palms.

Attorney Steven Sion knows that as a Republican he will have a difficult time, if he wins his party's nomination, taking on a Democrat in the general election. But he sees himself as a moderate who can show voters they have other options.

"I want to give the voters in my district a clear choice this election," Sion said. "Historically our district has been dominated by one party. This time I'm going to compete for the seat because I want to show there's an alternative."

He believes Democrats that have represented the district have failed to improve the education system and the business climate.

Sion would like to see reforms to the health care system and supports a plan put forward in the Legislature last year that would make health insurance similar to car insurance - with everyone required to have it - and a state purchasing pool for those who can't easily obtain it.

Sion also supports efforts to break up the Los Angeles Unified School District, saying there is a need for greater local control and accountability, and he would like to see more charter schools.

On transportation, he would like to see the state look at a monorail system, starting with a model program in his district.

Clark Baker is a retired Los Angeles Police Department officer and ex-Marine. He describes himself as a one-time liberal who became a Republican after joining the police force.

"I saw from the inside, the street level, what goes on in L.A. city politics. I never pursued politics before. I never wanted to be a politician, but when I found out who the other candidates were, I thought, More of the same?"

Baker would like to give parents full vouchers to send their children to private school for no cost, and he would like public school parents to have their choice of public schools.

He would also like the state to encourage the federal government to tighten border security, through additional border patrol agents, the building of a wall on the border and employing new technologies.

He would also like to see public services denied to illegal immigrants, along with driver's licenses and in-state tuition.

He would also like to toughen the prison system by establishing a series of tent encampments for prisoners in the desert to relieve overcrowded jails.


(916) 446-6723

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Woman injured by doctor wins suit

Woman injured by doctor wins suit

Will County jury awards $2 million in malpractice case

By Stewart Warren

JOLIET — After unnecessary surgery that caused two injuries, a Joliet woman sued her doctor and won.

A Will County jury awarded $2 million to Mary P. Smith, 38, of Beecher, on April 12 after a seven-day bench trial. Now unemployed, Smith formerly worked in office administration.

In August 2001, she noticed a small lump under one arm and saw Dr. Joy D. Marvin of Surgical Consultants of Joliet. Marvin decided the lump should be surgically removed but did not do a biopsy, said Bill Kozal, one of Smith's lawyers and a partner in Rathbun Cservenyak and Kozol. The doctor didn't explain the procedure to Smith and didn't mention the risks involved, Kozol said.

Marvin removed a mass of tissue from an area under one of Smith's arms in September 2001. It was about three inches long and two inches wide, or about the size of a small banana that had been cut in half, said Ted Jarz, who also represented Smith.

The doctor then stitched the area, causing damage to some of Smith's lymph vessels and nerves. Later tests revealed that the tissue was normal, Kozol said. There was no sign of pre-cancerous or cancerous cells.

Now Smith suffers from lymphedema, a swelling that happens when the lymph node system is damaged. She also has reflex sympathetic dystrophy, a painful condition that is a result of damage to the nervous system. Because of the permanent injuries, Smith doesn't have much use of her right arm, Kozol said.

Marvin was represented by Martha Swatek of Adams and Swatek, Geneva.

"The case involved complex surgical issues that we believed favored a defense verdict, and we are very disappointed by the jury's decision," Swatek said. Marvin is considering an appeal, she added.

Last August, Gov. Rod Blagojevich signed a law limiting the amount of money people can collect in lawsuits against hospitals and physicians. Among other things, it capped the noneconomic damages for pain and suffering that malpractice victims can win in court.

Now there is a $500,000 limit when the defendant is a doctor and a $1 million limit when the defendant is a hospital. Smith's case wasn't subject to the new caps on jury awards because she received medical treatment before the new law was created.

The award is fairly large for a Will County jury, Jarz said.

"We believed in the case from the very moment it came in, and obviously the jury believed in it, too," Kozol said.

- Reporter Stewart Warren can be reached at (815) 729-6068 or via e-mail at swarren@scn1.com.


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Monday, May 01, 2006

Nerve syndrome causes chronic pain

BrittRowe, originally uploaded by rsdscrpsnews.

Nerve syndrome causes chronic pain
Living with reflex sympathetic dystrophy

The News Journal

When 16-year-old Britt Rowe gets up in the morning, one of the first things she does is check the weather outside. If it's rainy, she knows she could be in for a painful day.

Her body is more sensitive to cold, wet conditions than most. Pain attacks her body, especially her legs. Her skin, already aching, swells and turns shades of purple and red. On those days, sweat pants are more than a fashion choice -- they're a necessity because the feeling of denim aggravates her skin.

Britt's reaction to the weather is but one of the effects of reflex sympathetic dystrophy, a chronic pain condition that results from a malfunction of the nervous system. Those who live with the progressive disorder -- also known as complex regional pain syndrome -- endure severe, burning pain in parts of their bodies, usually their extremities. And the symptoms don't go away.

People with reflex sympathetic dystrophy, also known as RSD, usually develop it after an accident, injury or surgery that somehow doesn't heal nor- mally. Instead, the injury causes the sympathetic nervous system -- responsible for the fight-or-flight response -- to respond in an abnormal way. For people with reflex sympathetic dystrophy, this can include intense pain, skin sensitivity, swelling of their tissues, tremors or other movement problems.

In Britt's case, it was a bout of the flu just before she turned 12 that caused the condition. The Mount Pleasant High School sophomore said she feels pain every day, though not all the time. It's more like an on-and-off thing, she explains. She manages most days, except when she gets extra-painful flare-ups, such as on New Year's Eve, when she suffered through 10 hours of sweating, shaking and feeling nauseated, not to mention excruciating pain, mostly in her legs.

Despite her condition, she hasn't missed many days of school, although she gets extra time to complete her assignments. She takes 17 prescription pills a day and follows a special diet to keep her symptoms at bay. Even with that, she sometimes has to take additional pain medication like Advil to try and dull the pain. Often, it doesn't help.

Although RSD has forced her to restrict activities like sports, Britt doesn't let her condition get in the way of what she wants. Her mother, Laurie, said Britt's teachers are amazed at how much she pushes herself, even when she's in pain.

"I think I'm kind of used to it anymore," Britt said.

Individual experiences

The effects of reflex sympathetic dystrophy range from patient to patient. Some people are able to manage their symptoms while others find their lives restricted or limited because of the condition. Nearly all people with RSD require some type of medication to control their pain.

"RSD is just such an individual disease," Laurie Rowe said.

If there's one similarity among patients with reflex sympathetic dystrophy, it's that they feel severe, often debilitating pain in parts of their body, said Dr. Robert J. Schwartzman, chairman of the neurology department at the Drexel University School of Medicine in Philadelphia and an RSD researcher for three decades.

circulation problems, muscle atrophy, swelling, tremors and difficulty moving.

Schwartzman, who has seen more than 5,000 patients with RSD, said it's still a mystery why some patients develop the condition after a minor injury, such as spraining an ankle. What seems to happen is the injury hurts nerves in the body, causing genetic changes in the spinal cord. Because of these changes, Schwartzman said, genes in the spinal cord make new proteins that cause the swelling, redness and temperature sensitivity seen in many RSD patients.

Because there are no medical tests for RSD, it often takes awhile before patients are diagnosed. Most of the patients Schwartzman sees have been to four or five doctors before they were diagnosed. In the past, many doctors ignored the complaints from their patients, he said, or viewed their ailments as psychological rather than physical.

"It's frustrating for them. They're hurting," he said. "They're living with it, and it's horrible."

Recently, Schwartzman said, doctors are becoming aware of the condition and its symptoms.

Twenty-two years ago, Gerry McLaughlin was walking along the shore at Brigantine Beach in New Jersey when she stepped on a small pebble. Instantly, pain sliced through her left leg. She couldn't walk.

"You couldn't see the stone, it was so small," said McLaughlin, a retired nurse. "But it hurt so much. I thought something was wrong with my foot."

McLaughlin sought help from a foot doctor, neurosurgeons and other physicians until she was finally diagnosed with RSD. After trying different treatments, she has found comfort from a sympathectomy, a minimally invasive medical procedure in which sympathetic nerves are clipped to relieve pain and other symptoms.

Although her symptoms have been greatly reduced, McLaughlin said she still is careful about not reinjuring herself because it can trigger a flare-up of painful symptoms. She used to dance, but rarely does now because of the risk someone might step on her feet.

"If you hurt yourself again, it comes back with a vengeance," said McLaughlin, who helps run a support group at St. Francis Hospital for people with RSD.

Facing the changes

Four years ago, Robin Harvey was a billiards dynamo, playing on the team that won the Delaware state billiards championship and competing in a national billiards tournament in Las Vegas.

He was good, but shooting pool was only one of his hobbies. An avid outdoorsman, Harvey counted tennis and golf among his favorite sports.

These days, he's lucky if he can play a game of pool more than once or twice a month. Gone are weekends spent on the golf course. The $200 Prince tennis racket he bought a few years ago sits idle in his Fair Hill, Md., home.

He dropped his old activities because his body hurts too much to attempt them.

Harvey said he began developing symptoms of RSD about six months after he had surgery in 2003 to repair a herniated disc in his neck. After the operation, he began to feel a burning, stinging sensation in his hands. Then they started shaking. Harvey, who had carpal tunnel syndrome in both hands, had never experienced pain like this before.

After seeing several doctors, he was finally diagnosed with RSD. During the last three or four months, the symptoms have moved into his feet, causing numbness and the feeling of being sunburned. As a result of his condition, Harvey doesn't drive anymore. On bad days, he struggles to button his own shirt. Sometimes his wife has to cut his food because his fingers can't work the knife.

It can be depressing for RSD patients to realize how much their condition impacts their lives.

And it's not always easy to share your experiences with people who don't have the problem.

"People don't understand what it is or how much pain you can have around the clock," said Harvey, 45, who takes medication each day to control his pain. He can no longer work because of his condition. "Everything I do causes a certain amount of pain."

Contact Kelly Bothum at 324-2962 or kbothum@delawareonline.com.

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