Prior Lake woman started support group to help other sufferers of Reflex Sympathetic Dystrophy Syndrome cope

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This Week Online, originally uploaded by rsdscrpsnews.

Prior Lake woman started support group to help other sufferers of Reflex Sympathetic Dystrophy Syndrome cope

Posted: 3/17/06

by Andrew Miller
Thisweek Newspapers

Take all the blood out of your body, replace it with lighter fluid, and light a match.

That’s the description one sufferer gave of Reflex Sympathetic Dystrophy Syndrome (RSD).

A support group started by a Prior Lake woman is helping people cope with this painful and poorly understood disease.

Bonnie Ueland-Scherer has suffered from RSD since twisting her ankle in an icy parking lot eight years ago.

Little is known about the underlying cause of RSD, which was first described during the 1860s. It can strike at any age but is most common between ages 40 and 60.

There are about 300,000 people in Minnesota diagnosed with RSD, and many more who are either undiagnosed or misdiagnosed, Ueland-Scherer said.

Symptoms usually occur near the site of an injury, and they include swelling, abnormal skin coloration, and severe pain which limits range of movement.

The rare nature of the disease meant for Ueland-Scherer a long process of trying to obtain a diagnosis. It took 17 referrals before she learned what had gone wrong with her body.

“Even after diagnosis I continued to receive conflicting comments from medical professionals,” Ueland-Scherer said.

The lack of clarity among medical professionals, and the resulting confusion she felt, prompted her to start a support group and the Minnesota RSDS/CRPS Coalition.

The intent of the support group is to provide information on and strategies for coping with RSD.

The nature of the ailment makes life difficult in a number of ways — in addition to the constant pain that precludes holding down a job, there’s also the financial burden of never-ending medical expenses.

Loneliness is often a problem, Ueland-Scherer said, owing to RSD being so widely misunderstood. And while her family has been fully supportive of her battle against RSD, the financial burden and the way it limits activity puts a strain on family life for many sufferers.

The support group meets twice monthly — from 10 a.m. to noon on the second Saturday of the month in Brooklyn Center and on the fourth Saturday of the month at the Savage Public Library.

At group sessions participants discuss topics that range from coping techniques, ways of effectively communicating with physicians, and new medical information on RSD.

“The No. 1 thing is they don’t feel so alone, and that’s something we’ve heard from every single member,” Ueland-Scherer said.

“We always have boxes of Kleenex available because it’s so powerful for them to know they’re not alone. It’s a family.”

The problems Ueland-Scherer encountered in trying to get an accurate diagnosis are not uncommon, she said. Typically, people with RSD see an average of five physicians before being accurately diagnosed.

One goal of the Minnesota RSDS/CRPS Coalition is to educate medical professionals, as well as the public, on the disease.

The group’s Web site, http://www.rsdsmn.citymax.com, provides RSD information and hosts discussion groups for both sufferers and family and friends of sufferers.

To learn more about the Minnesota RSDS/CRPS Coalition and RSD support groups, visit http://www.rsdsmn.citymax.com.

For general information on RSD, visit http://www.rsdsa.org and http://www.rsdhope.org.

Andrew Miller is at savage.thisweek@ecm-inc.com.

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One response to “Prior Lake woman started support group to help other sufferers of Reflex Sympathetic Dystrophy Syndrome cope

  1. “There are about 300,000 people in Minnesota diagnosed with RSD, and many more who are either undiagnosed or misdiagnosed, Ueland-Scherer said.”That was a typo…I said 3,000 and that may be too low. There were a few others in there but this one stays with me.Take care all,Bonnie

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