Drawing attention to mystery illness

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nj.com, originally uploaded by rsdscrpsnews.

Drawing attention to mystery illness

Sunday, February 05, 2006
By Anne B. Jolis
ajolis@sjnewsco.com

WASHINGTON TWP. — There’s no national awareness day for RSD patients.

It’s all they can do to get treatment.

RSD, or Reflex Sympathetic Dystrophy, affects the sympathetic nervous system. The condition is a mysterious one — who gets it and why is still unclear, though it is almost always triggered by some kind of injury.

“It can be something as innocuous as someone drawing blood and hitting a nerve instead of a vein,” said Dr. Philip Getson, a family practitioner who specializes in RSD. Getson is also an associate professor of medicine in the Department of Neurology at Drexel University College of Medicine.

RSD affects everyone differently — and it goes through stages — but it’s main symptom is chronic, intense, burning pain. Some get it only in one place in the body, though it can spread.

Others, like township resident Kristin Birchfield, get it all over their bodies.

Birchfield, 36, was a healthy, active woman until she gave birth to her daughter three and a half years ago. The anesthesiologist stuck her with a needle six times, Birchfield said, while administering an epidural, and left her with the lifelong incurable RSD.

“It went from being the best day of my life to being the day that I lost my own,” said Birchfield. “The only thing you’re aware of is the pain — and trying not to impose that on the people you love.”

Getson said there are a number of treatment options — none of them perfect, each with its own drawbacks. The first, Getson said, is some form of psychological intervention, from therapy to antidepressants to meditation to Yoga and Reiki.

Currently, both Getson and Dr. Robert Schwartzman, also in the Department of Neurology at Drexel, are the only doctors in the U.S. who perform ketamine treatments.

“We haven’t cured anyone, but we have been able to improve people’s lot in life,” said Getson.

In Germany, doctors use a different procedure, infusing the ketamine over a five-day period while the patient is in an induced coma, which Getson said enables them to give patients a much more intense and effective dose of ketamine. In the U.S., the FDA has banned this practice, forcing Schwartzman and Getson to do the treatment while the patients are awake, which Getson said is far less effective.

Just over a year ago, Kristen Birchfield went to Germany for the coma-induced ketamine treatment with $40,000 raised through fund-raisers and the help of strangers.

“When I got back, I had a lot of relief in certain areas,” said Birchfield. “But within four months, it just came back. All of it.”

Birchfield still gets infusions here in the US, but because Schwartzman and Getson are so overbooked she won’t have the next one until March. Her muscle and nerve spasms still frighten her baby daughter, she still can’t sleep in the same room as her husband, she still can’t practice the painting she loves or sing in her church choir. Her body is covered in lesions that won’t go away. The pain, she says, is intolerable.

Thomas Gariffo, 60, also from Washington Township, has a different story. His RSD likely started in the late 1990s when he underwent a series of botched operations for gout he suffered in his foot. He went from physician to physician, he says, and was even sent to a psychologist, with no relief.

“Doctors will tell you you’re crazy,” said Getson. “They say if you look normal, you must be crazy. For the most part, this is a disease you can’t see.”

Finally, in October 2000, he was diagnosed with RSD. Since his disease is mostly confined to his foot, Gariffo said that a spinal cord stimulator has made his life livable.

Gariffo is lucky.

According to Getson, early diagnosis and intervention is the key to successfully treating RSD — hard to come by, since so few doctors recognize the condition for what it is.

“I have the pain 24 hours a day, seven days a week,” said Gariffo. “But I can do a little gardening, I can help my wife do the laundry or stuff like that. I’ll never be 100 percent.”

As for Birchfield, she says, she would give anything right now to be the kind of mother she longs to be — to play with her daughter, to give her a bath, to pick her up and cuddle her whenever she gets the urge.

“There are no good days,” said Birchfield. “But on a bad day — I know it sounds terrible — I feel it would have been kind to me and my family if I would have died.”

“On those other days,” she added, “I can’t help but hope that God is saving a spectacular miracle just for me.”

For more information on the diagnosis or treatment of RSD, go to http://www.rsds.org.

There are two support groups in South Jersey, in Mount Holly and Mount Laurel. To get in touch, call Kathy Henson at (609) 268-1565 or Sue Holcomb at (856) 461-5941.

Click Here For Original Article Online

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