A DELIGHTED South Yorkshire girl has been out with her pals for the first time in three years as she begins the long road to recovery from a rare illness.

Amy Kennedy, of Doncaster, has been bed-bound since she was struck with a condition called complex regional pain syndrome.

But after undergoing pioneering medical treatment in America, Amy has now improved enough to enjoy her first evening out to a restaurant with friends, and spent two hours at the weekend in a town centre restaurant on High Street, to celebrate her 15th birthday, which is today.

And the following day she made her first visit to a friend’s house for three years, staying overnight.

She has been back in England for two months after a three-week course of treatment and still suffers pain through her condition – but it has been reduced to the point she is finally able to get out of bed and move about her home on Adlard Road in a wheelchair.

Amy said: “It is something most of my friends do all the time – but going out for the first time in three years meant the world to me. It feels as though my treatment has changed my life. After three years of being bed-bound, I have now had the best weekend ever.

“Now I would love to go to the cinema to see a film, which a few years ago I never thought I would do again.”

The syndrome, which affects 11,500 people in the UK, left Amy with a chronic burning pain in her limbs, unable to take any pressure on her legs.

The disorder is so rare the specialist treatment she has undergone is available only in America.

Her treatment in the US involved the application of an electrical current to pads placed on her body.

She has continued with the treatment with a machine she has brought back from America.

Her mum, Zoe Matters, said she had finally been able to get out with pals for a meal at a restaurant.

“It is going really, really well. She can now touch the top of her leg, which she could not before the treatment started because it was too painful.

“She can now get into a wheelchair and we can take her into other rooms. She is still in pain, but it is tolerable for her now. She can get out of bed and do a couple of hours in a wheelchair.

“We managed to find a taxi that can take wheelchairs, so that we could take her out to see her friends.”

“It is the first time she has been out socially for three years. She has only been out for hospital visits over that time.

“She was looking out of the window at the Christmas lights in wonder – she has not seen anything but her bedroom wall for three years before this.”

“The machine she has brought back is working wonders.”

Amy had her evening out with eight pals, plus her mum and grandmother.

Earlier the same day, she met injured Doncaster paratrooper Ben Parkinson, who told her about his battle to walk again after his was wounded. Zoe hopes Ben’s story will be an inspiration to her.

The family are now hoping to get their home modified so they can use a wider wheelchair with larger wheels, which would allow Amy to move it herself by pushing the wheels with her hands.

They have been in touch with Doncaster Council over the work, but have been told there is a waiting list.

Her doctor in America has told her she may be able to walk on crutches in three years’ time.

The family raised more than £50,000 from a series of community events to give Amy the chance of specialist treatment.

She first complained of knee pain at around the age of seven but was not diagnosed despite MRI scans and numerous X-rays. Her condition got gradually worse after she fell awkwardly during a dance class.

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Therapy Overcomes Complex Regional Pain Syndrome

By Greg Thompson

by Brandy Aguilar, Special Projects Producer

azfamily.com

Posted on September 21, 2010 at 9:56 PM

Updated Tuesday, Sep 21 at 10:02 PM

When your body is in pain, feeling better is important. But for one Valley woman, it’s a struggle she’s battled for years. 3TV shows us the treatment that’s giving her a second chance and why she no longer has to trek across the country to find relief.

“If you touch me I would literally fall to the floor,” Barby Ingle said. “It takes your breath away.”

Ingle suffers from a neurological condition called Reflex Sympathetic Dystrophy or RSD. It affects everything from muscles, joints, bones even your skin.

“You’re going to have constant burning pain, but you also have other types of pain that come in shooting, stabbing, cutting, searing, deep bone pain,” Ingle said. “Sometimes I feel like I’m getting hit with electricity.”

Doctors said something as simple as a mild injury can trigger RSD. In Ingle’s case, she said her pain started eight years ago after she was rear-ended.

“I started with whiplash and all the surgeries I didn’t need caused it to spread,” Ingle said.

Ingle could no longer keep up with the demands of being a cheerleading coach. Unfortunately it took three years to find out RSD was the culprit.

“There was time that I lost my hope,” Ingle said.

Then last year, Ingle’s hope was restored after she got Ketamine infusions. Her pain went into remission, but to keep it that way, she’s had to get booster treatments on a regular basis. The problem is she had to fly to Drexel University hospital in Philadelphia, but today she no longer has to travel across the country to get rid of her pain.

Doctor Steven Siwek at The Pain Center of Arizona is the first in the Valley to offer these booster treatments for people suffering with RSD.

“Ketamine is a medication that is specifically acting on receptors that have been disrupted,” Dr. Siewek said. “We’re going to give her the ketamine infusions over the next couple of days.”

That process is time consuming. It takes four hours a day, over a two day period to administer one of the booster treatments. But for Ingle, it’s time well spent.

“I’m a still a cheerleader and I can give other people hope,” Ingle said. “I’m cheering for people in the human connection and making everybody’s life as good as it can be.”

September is National Pain Awareness Month. Ingle’s Power of Pain Foundation is teaming up with the Arizona Diamondbacks this Sunday to strike out chronic pain.

The Power of Pain Foundation will team up with the Arizona Diamondbacks to Strike Out Chronic Pain on Sunday, September 26 at Chase Field Ballpark (Diamondbacks vs. LA Dodgers) at 1:10 p.m. Discount tickets are available by calling (480) 882-1342 or by going toPower of Pain.

For Joseph Martinez, life has been a downward spiral for the past six months, dragging the Torrance teen from a state of normalcy into one of constant, inexplicable pain that has robbed him of an entire school year and left him bed-bound since fall.

But on Tuesday, the 14-year-old, whose plight was detailed by the Daily Breeze on March 25, finally caught a break.

Aided by ambulance crews, the former baseball player and student at the St. Catherine Laboure school was loaded by gurney into a medical aircraft, moaning in pain all the while. The plane was headed for Lucile Packard Children’s Hospital in Stanford, one of a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome, the rare disorder bedevilling him.

Previously, the family’s health-care provider had refused to authorize treatment for Joseph on the grounds that the plan only covered expenses for services rendered within the network, which is limited to the South Bay.

Late last week, however, the health provider – THIPA – had a change of heart. As a result, Joseph and his mother, Susan, boarded the plane Tuesday morning at Torrance Municipal Airport, as five teary-faced members of his family looked on.

“This is the start of the journey he should have been on five months ago,” said his grandmother, Virginia Dilliner.

Dilliner added that just seven months ago, when she came to visit the family from her home in New Mexico, Joseph was well enough to answer the door.

“By January, he couldn’t even walk,” she said. “Everybody misses him so much.”

Afflicting between 200,000 and 1.2 million Americans, complex regional pain syndrome is characterized by severe and relentless pain due to misfiring nerves, which in turn send pain signals to the brain, according to the Reflex Sympathetic

Joseph Martinez writhes in pain in the ambulance before being air transported to Northern California where he will undergo treatment for his chronic pain syndrome. (Brad Graverson / Staff Photographer)

Dystrophy Syndrome Association.So extreme is the misery of the sufferers that the association once used the following slogan to describe the condition, formerly known as reflex sympathetic dystrophy: “If hell were a medical condition, it would look like RSD.” (In 2008, the association changed the slogan to “Take Flight with Hope.”)

In Joseph’s case, doctors within his network were perplexed by his symptoms. Some erroneously suggested it was psychological – pain experts say it is neurological – and others prescribed heavy-duty pain medications such as methadone, which briefly turned him into an addict.

Meanwhile, Joseph’s classmates organized a fundraising drive. Since the March 21 launch, they’ve raised $26,000.

“We are still working to raise more money, because we know how expensive the treatment is,” said Kathleen Gorze, the school’s principal, adding that the treatment is estimated to cost $17,000 a week. “And we know insurance isn’t going to cover it all.”

Gorze said she has been amazed by the public outpouring.

“We’ve had some people walk in off the street with $40 and say, `Sorry I can’t give more,”‘ she said.

Among the donors was a 3-year-old girl who went door to door in her neighborhood with her parents to raise money for the family. The girl recently came to the principal’s office to deliver her yield: $21.50.

As for the medical provider, it reversed course in part due to the wheedling of Dr. Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA. Zeltzer was the 19th doctor the family had visited, and the first to tell Joseph in no uncertain terms that she believed him, the family said.

On Tuesday, Zeltzer said most insurance companies and health-care providers do not understand complex regional pain syndrome.

“They think it’s psychological, not real pain,” she said Tuesday. THIPA, she said, was the same way. “It’s not that they were evil, it’s just that they didn’t understand.”

Fortunately, Zeltzer said, the director of the medical group had previous training in pain management, and so understood the gravity.

“She was an advocate within the system, and explained it to the CEO,” she said. “She needed a lot of documentation from me.”

Zeltzer said that by the time Joseph came into her office in January, he’d gone for too long without proper treatment.

“When I saw him in the waiting room, he was screaming; he kept apologizing between the screams,” she said.

Because Zeltzer’s program doesn’t have an in-patient component, she can’t treat him. She said she regularly sends children with the disorder to the Stanford program, which is headed up by Dr. Elliot Krane.

“I’ve referred many patients to him, and they’ve all gotten better, even though they were train wrecks when they first got there,” she said. “He’s superb.”

Zeltzer said she expects Joseph will stay in Stanford for at least three weeks. There, he will undergo intensive physical therapy, with specialists reteaching him how to walk. Psychologists and psychiatrists will help him with depression and anxiety.

Complex regional pain syndrome tends to be triggered by a traumatic event, such as a car accident or medical procedure. In Joseph’s case, the family believes the catalyst was an episode of food poisoning that left him with flu-like symptoms.

There is no cure for CRPS, but the disease can be slowed, according to PubMed Health, a consumer health website produced by a division of the National Institutes of Health.

The Martinez family is a single-income household, with Susan holding down a job as a project dispatcher at Triumph Aerostructures in Hawthorne. The father, Justin – who himself suffers from a spinal disease – is Joseph’s primary caretaker during the day.

On the airport runway Tuesday, Justin’s three siblings, father and grandmother hugged tearfully as the plane carrying Joseph and Susan roared away.

Matthew, the eldest, said it seems like yesterday when he’d come home from school to find his smiling brother in the living room, playing video games such as “Call of Duty.”

“He’s really good at it,” said Matthew, who will attend California State University, Long Beach, as a freshman in the fall. “Now he’s just moaning and screaming.”

Justin said he has been overwhelmed by the community’s response.

“The economy’s bad, people are jobless are out there,” he said. And yet “we have people out there (who say) `I can’t afford to send much, here’s $20.’ … It’s just amazing. It feels good.”

rob.kuznia@dailybreeze.com

By Laura McVicker
Columbian Staff Reporter

Originally published February 7, 2011 at 5:14 p.m., updated February 7, 2011 at 6:25 p.m.

Having become addicted to Oxycontin as a patient of a controversial pain clinic, a Vancouver woman robbed a pharmacy last June, then tried to rob another less than two hours later.

On Monday, Larae Corzine, 40, pleaded guilty to charges relating to both events and was sentenced to 16 months in prison.

She was a patient at the Vancouver-area Payette Clinic, now called Walnut Grove Medical & Mental Health Clinic, which forfeited its ability to prescribe painkillers in March 2009 following a state and federal investigation that found practitioners were overprescribing opioids.

The enforcement action suddenly cut off hundreds of patients’ prescriptions for pain medications, triggering what some doctors later termed a public health crisis.

Corzine pleaded guilty to second-degree attempted robbery relating to an incident at the Vancouver Clinic pharmacy, 501 S.E. 172nd Ave., and second-degree robbery relating to a holdup at the Bi-Mart pharmacy, 11912 N.E. Fourth Plain Blvd. Both crimes occurred on June 18.

She also pleaded guilty to attempt to elude an officer because she fled from police following the Bi-Mart robbery, crashed her Ford Taurus and broke her foot.

She was still using a wheelchair Monday because of the injury.

“She was being prescribed giant dosages,” her attorney, Brian Walker, said in court. “It drove her to this crime.”

“She does not recognize herself,” Walker added to Clark County Superior Court Judge Roger Bennett. “This is simply not something she would do.”

Bennett imposed the sentence, which will include credit for the 230 days she’s spent in the Clark County Jail. He said he appreciated knowing about Corzine’s drug addiction, but that it wouldn’t soften the sentence.

“It gives us a motive, but not an excuse,” Bennett said.

Corzine was featured in an April 2009 article about the Payette Clinic on The Columbian’s front page, in which she told a reporter that her husband, Steve, was a patient there. She omitted the fact that she also had been a patient for three years.

She told the reporter that her husband suffered from reflex sympathetic dystrophy and was in pain, was not an addict, and needed help.

“The pain is 10 times worse than it’s ever been,” Corzine told The Columbian in 2009. “He’s vomiting and shaking. I’m surprised he hasn’t gone into seizures.”

Corzine was arrested following the Bi-Mart robbery in June. After she was taken to Southwest Washington Medical Center and later jailed, investigators linked Corzine to the other robbery attempt through surveillance video and witness identifications, according to court documents.

Deputy Prosecutor Alan Harvey said that during the Bi-Mart robbery, she told a clerk that “she’s going to shoot them in the head” if she didn’t receive Oxycontin.

She took off with an undisclosed number of pills.

An hour and a half before this robbery, Harvey said, Corzine tried to rob the Vancouver Clinic and a pharmacy clerk told police that she had a gun in her waistband.

Harvey said investigators couldn’t find more-concrete evidence on whether Corzine was armed, preventing him from pursuing a first-degree robbery charge at trial.

There was also evidence that Corzine might have been the bandit in two previous Bi-Mart robberies, Harvey said. But her defense attorney said surveillance video showed a person with different physical features.

The Payette Clinic drew controversy after the highly publicized December 2008 overdose death of an Oregon teenager was linked to Payette. The girl, Rachel Daggett, had been smoking an oxycodone pill originally prescribed to a Payette patient.

A wrongful death suit in her case is pending in Multnomah County Circuit Court. A medical malpractice suit with four plaintiffs also is pending in Clark County.

In spring 2009, hundreds of Payette patients, suddenly cut off from their opioid prescriptions, swarmed hospitals and urgent care centers, causing what some physicians called a public health crisis.

They were described as severely addicted or suffering extreme withdrawal symptoms.

Laura McVicker: 360-735-4516 or laura.mcvicker@columbian.com.

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