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Little-known disease introduces athlete to agony


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Photo
provided
Elizabeth Maul, 22, shown with her fiance Jonathon Radun, was a Junior
Olympics-caliber field hockey player at Cherokee High School in Marlton
until Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome left her
in agony. She is now able to dance and helps manage her pain with diet
restrictions and holistic therapy.

*HOW TO HELP*
You can offer donations to the Bounty of Hope dinner and silent auction, or
donate to Reflex Sympathetic Dystrophy research by calling Betty Maul at
(856) 547-1600 or e-mailing her at bettymaul@....

------------------------------
*MORE INFORMATION*
For more information on the disease, contact the Reflex Sympathetic
Dystrophy Syndrome Association at www.rsdsa.org <http://www.rsdsa.org> or
call (203) 877-3790.

Another source for information on this disease, which, by some estimates
attacks up to 200,000 people each year, is the International Research
Foundation for RSD/CRPS at www.rsdfoundation.org/<http://www.rsdfoundation.org/>
.

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Thursday, October 20, 2005

By JEAN REDSTONE
For the Courier-Post


In a matter of months, Bob and Betty Maul of Marlton saw their daughter
change from a Junior Olympics-caliber athlete to a teenager unable to walk
up stairs or feel a breeze without agonizing pain.


Their daughter's ordeal added "activist" and "fundraiser" to Betty Maul's
credentials.


Maul is using the contacts and business acumen she has acquired as co-owner
(with her husband) of FrontEnd Graphics Inc. in Cherry Hill to promote
awareness of and provide research funds for Reflex Sympathetic Dystrophy,
often called Complex Regional Pain Syndrome and referred to as RSD or
RSD/CRPS.


She is co-chair of the Bounty of Hope fundraising dinner and auction, to be
held from 6 to 10 p.m. Nov. 3 at the Union League Club in New York. The
event raised $117,000 last year.


Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome is a very long
name for a little-understood disease that attacked "the smallest Maul of
all" -- Maul's affectionate nickname for her daughter, Elizabeth, now 22.


"She was the youngest of our three children," Maul said. "They were all
athletes, all into sports."


Reflex Sympathetic Dystrophy is a disease that can attack following trauma
of any sort, Maul said. "It's like a misfiring of the brain -- like the
nerves overreact. People who have this have pain 24 hours a day. It's
constant, severe pain," she said.


Doctors don't know why it attacks or who is susceptible, although surgery is
often a trigger, according to Maul's research. Stress fractures


Elizabeth Maul's trouble began with stress fractures in her shins that
developed during her field hockey career at Cherokee High School, where she
was a midfielder.


The fractures required a regimen of six weeks of light use, rest and
crutches for walking. She was 16 and had already played in the Junior
Olympics in Cleveland in 1999.


"I really like (field hockey) and I was very athletic. I played since sixth
grade," said Elizabeth Maul, who is now student teaching, having earned her
degree at Wheaton College, just outside Chicago.


"My RSD started from the stress fractures," she explained. "After I started
using my legs again, my left leg hurt as bad or worse than when I had the
fractures. They were healed, but the leg still hurt. I had even more pain
than when I had the fractures."


Elizabeth's collapse one day on the field led to seeing an endless round of
doctors to try and find out what was wrong, Betty Maul said.


"Her leg changed colors, it was swollen -- a different temperature from the
other leg; there was no hair growing on it. We had to cut away her pants and
shoes. She couldn't have a breeze touch her leg. We watched her go from an
athlete to where she couldn't walk up the stairs," Betty Maul explained.


Maul's visits with her daughter to doctor after doctor included sessions
with psychiatrists, neurologists, orthopedists, oncologists and, finally,
Boston Children's Hospital.


She was sent there, she said, by the Reflex Sympathetic Dystrophy Syndrome
Association, a support group she found online. At the time, it was
headquartered in Haddonfield, but it's now in Milford, Conn.


And it was there the Mauls learned of the disease -- from a physical
therapist who overheard them speaking with a pediatric orthopedist, Betty
Maul said. Endless doctors


The rounds and rounds of doctors were nearly as painful as the disease,
Elizabeth Maul confessed.


"We did bone biopsy, went to doctor after doctor -- to all kinds of
specialists. When you're 16 years old, in so much pain you can't even put
weight on your leg and going to see an oncologist -- yes, I was scared," she
said.


The diagnosis was not comforting. RSD/CRPS is often not easily treated,
cannot be cured, and frequently requires heavy-duty pain medication, doctors
have told Betty Maul. The Mauls felt lucky Elizabeth's pain was limited to
one leg.


Elizabeth had surgery to block the nerve to her leg, underwent physical
therapy and took prescription medicines for years.


Now, she says, she has stopped the prescriptions and relies on kinesiology,
a chiropractics specialty that attempts to open blocked nerve paths. She
visits holistic therapists and has a strict diet (no red meat; limitations
on sugars, corn, wheat and dairy products) geared to her body's needs.


She can't do regular exercise, "but I can dance," she said. So Elizabeth
does ballet, jazz and hip-hop as part of her therapy.


She said she is "still in pain, but obviously, I'm in livable pain. I have
pain in my leg, back and neck every day, and some days are worse than
others. But I choose to live like I don't have pain every day."


Elizabeth is getting married in February.


She will also attend the fundraiser in New York her mother co-chairs with
the RSDSA support group.


Betty Maul is hoping to raise $150,000 this year and is soliciting auction
donations, such as overnight hotel accommodations, sports tickets or signed
memorabilia and restaurant gift certificates from the Philadelphia area.


Jean Redstone is a freelance columnist for the Courier-Post. Reach her at
jeanredstone@...

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