Monthly Archives: February 2013

People: Gina’s Story (from TheChive.com)

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A brave Chivette needs our help. This is Gina’s story

FEBRUARY 19, 2013


It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina’s bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, “It was as if somebody was filling my arm with lighter fluid and lighting a match.”

After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the ‘Suicide Disease.’ Complex Regional Pain Syndrome (CRPS).

Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.

On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.

If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn’t long until CRPS began its assault on her immune system. Gina’s immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina’s immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.

Three months ago CRPS accessed Gina’s nervous and circulatory systems, which causes progressive damage to her internal organs. Gina’s digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.

Living with CRPS is a contradiction in terms, it’s not really living at all.

For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.

I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices with her boyfriend, Marine Corps Captain Jason Back. She walked up and gave me the biggest hug, “I’m a hugger” she said. The only thing I could think to say was to tell her: “Hi, Gina, we’re here to get you the help you need.”

 

 

 

Please click here to read the full article on the TheChive’s Website.

 

 

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Dr. Cooney Interviewed on Dr. Paul Christo’s Radio Show (Calmare Therapy)

Dr. Cooney Interviewed on Dr. Paul Christo’s Radio Show (Calmare Therapy)

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* * * * * Click here to listen to the show on Dr. Christo’s Website * * * * *

 

 

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People: Days full of pain for RSD patients

Days full of pain for RSD patients

January 2, 2013
By Evan Bevins – The Marietta Times (ebevins@mariettatimes.com) , The Marietta Times

Two years ago, Waverly, W.Va., resident Mindi Ford broke her arm.

It barely fazed her.

“I felt it snap, I heard it snap, and it didn’t hurt,” she said.

Article Photos

Waterford resident Missy Reed, left, and Waverly, W.Va., resident Mindi Ford discuss the effects of reflex sympatheic dystrophy syndrome, or RSD, a condition with which both have been diagnosed that causes excruciating pain, among other symptoms.

EVAN BEVINS
The Marietta Times

That’s because Ford has been dealing for a decade with pain that, according to the McGill pain index, is more than twice as excruciating as a broken bone, and even more severe than childbirth or having a finger amputated. Applying ice to her arms or taking a shower is agonizing, and a friendly pat on the shoulder once caused her to black out.

The condition is known as reflex sympathetic dystrophy syndrome (RSD) or complex regional pain syndrome. The cause is unknown, but it often results from a traumatic injury, sprain, fracture or surgery and causes pain in affected areas that is dramatically disproportionate to the injury itself.

Starting this year, November will be recognized in Ohio as Complex Regional Pain Syndrome Awareness Month, thanks to a bill recently approved by the General Assembly. It goes along with an effort by the Reflex Sympathetic Dystrophy Syndrome Association and folks like Ford to spread the word about the disease, generating awareness for research and for diagnosing people sooner, when the condition is more treatable.

Fact Box

On the Web

International Research Foundation for RSD/CRPS – http://www.rsdfoundation.org

Reflex Sympathetic Dystrophy Syndrome Association – http://www.rsds.org

RSD Awareness – http://www.rsdawareness.com

About RSD

Called reflex sympathetic dystrophy syndrome or complex regional pain syndrome.

The principal symptom is pain that is dramatically disproportionate to the injury, along with pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.

Physicians don’t know what causes the condition, but it usually occurs after a traumatic injury, surgery, sprain, fracture or period of immobilization.

There is currently no cure, but there are treatments that are more effective the earlier it is diagnosed.

Source: Reflex Sympathetic Dystrophy Syndrome Association.

Jim Broatch, executive vice president and director of the association, said there’s no good data on how many people RSD affects, but it’s estimated there are at least 50,000 new cases a year. Research is suggesting the cause is not just neurological but could also be inflammatory and related to the immune system.

“The evidence is starting to accumulate; there’s no smoking gun yet,” Broatch said.

Waterford resident Missy Reed, 44, is a registered nurse, but she knew virtually nothing about RSD when she was diagnosed with it four years ago. She contracted it in her left foot after surgery to repair her Achilles tendon and, as RSD tends to do, it spread to the other foot after a similar procedure two years later.

“I’ve been through two childbirths and a tubal pregnancy. And of course the tubal pregnancy was worse,” Reed said. “I would much rather go through the tubal pregnancy again than the RSD pain.”

Although she uses a combination of five medications to mitigate the effects of RSD as best she can, efforts to keep the pain from becoming even more unbearable affect even the smallest aspects of her daily life.

“I sleep on my stomach with my feet hanging over the bed,” she said. “Nothing’s touching them, so I can sleep.”

Reed said she can’t wear flip-flops to Walmart, lest the cold air from an opened freezer door send a burst of agony through her feet. And while she once held numerous track records at Fort Frye High School, she no longer runs.

“Year after year, your list of can’ts gets longer,” she said.

Both women said adapting to the pain and focusing on the positives in their lives help them deal with the pain, which is constant and sometimes flares to even higher levels.

Reed still works, something Ford, 45, is no longer able to do.

She ended up changing careers more than 10 years ago when the symptoms started. She had run a catering company, and believes the repetitive motions in which she carried heavy weights led to her contracting the disease.

“My arm was turning purple. It would just drop limp for no reason. I wouldn’t be able to hold a piece of paper between my finger and my thumb,” Ford said.

Then there was the pain.

“It really felt like my arm was in a campfire and you couldn’t pull it out,” she said.

The initial diagnosis was two conditions – carpal tunnel and thoracic outlet syndrome. An electromyogram eventually led to a doctor diagnosing her with RSD.

It was a condition she’d never heard of, but all the research she did afterward painted a bleak picture. There was no known cure, but the disease was treatable – if it was caught early, which Ford’s was not. Eventually, she got what she refers to as “the death sentence,” when “the doctors are pretty much telling you, ‘I’m sorry. There’s nothing more we can do.'”

“When you get that death sentence you mourn. You literally are mourning the death of the life you knew,” Ford said.

Ford and Reed attended Putnam Elementary School together but lost touch with each other after the sixth grade. They reconnected through Facebook, just as Reed was starting to deal with her diagnosis and recognized the symptoms Ford was describing online.

The camaraderie between them and other people living with RSD is an important part of coping.

“You can’t imagine it until you experience it,” Ford said.

It’s sometimes hard for friends and family, even some medical personnel, to grasp what an RSD patient is going through. The website for the Reflex Sympathetic Dystrophy Syndrome Association advises people who know someone with RSD to believe the pain is real, even if it doesn’t seem evident or seems out of proportion to what the individual is experiencing.

Ford said she frequently discusses her condition online, not to complain, but to raise awareness about it.

“We want people to see it, recognize it as a possibility and have it as one of the first things checked, rather than one of the last things checked,” she said.

Jolene Craig also contributed to this article.

 

 

Click here for the original article online.

 

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People: Kim Ki Bum’s Cousin, Actor Shin Dong Wook, Suffering From Serious Disease, CRPS

Kim Ki Bum’s Cousin, Actor Shin Dong Wook, Suffering From Serious Disease, CRPS

CJ E&M enewsWorldBy Stewart Ho | CJ E&M enewsWorld – Fri, Jan 11, 2013 2:37 PM PHT

Actor Shin Dong Wook has been diagnosed with Complex Regional Pain Syndrome (CRPS).

The news was recently brought to attention again by a fan in a letter online. As the fan revealed, the actor initially joined the military for his mandatory duties as an active soldier in the summer of 2010. But after finding himself repeatedly fainting, he underwent tests and was diagnosed at a hospital with CRPS and given an early release from his service.

CRPS is an extremely rare yet severe disease, though little is still known about the supposed neurological disease.

Symptoms often include extreme pain, swelling and changes in the skin and gradually worsen over time.

Even the slightest touch to a CRPS-afflicted individual brings excruciating pain. In comparison, childbirth is given a pain rating of 7, one’s skin burning a rating of 9 and the pain that a CPRS-afflicted individual feels a 10 on the same scale.

With treatment for the disease often proving unsatisfactory for CPRS patients, there are many cases of CPRS-afflicted individuals committing suicide, after being unable to bear the pain.

Netizens have since been flocking to send their encouragement to the actor who has remained mum on his own condition other than a short, “I’m ok, thank you” on his fan café recently.

Actor Lee Kyung also tweeted a message of encouragement to Shin Dong Wook on January 10, writing, “Dong Wook, who I filmed Stars Falling From the Sky with back in early 2010, has CRPS. Do you know that the cause of this rare disease is still unknown?”

He added, “Even in Korea there are 20,000 patients afflicted with the disease. How painful it must be. After reading the news and researching on it, my heart hurts. I’m cheering you on. Please beat this.”

Shin Dong Wook made his acting debut in 2003 and appeared in such dramas as Soul Mate, War of Money, Cloud Stairs and more. He is also coincidentally the cousin of Super Junior’s Kim Ki Bum.

Photo Credit: KBS

Click here for the original article online.

UPDATE:

http://ph.omg.yahoo.com/news/shin-dong-wook-is-continuing-to-positively-battle-084508193.html

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