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Local women cope with bone disorder

Tuesday, January 09, 2001

By Virginia Linn, Post-Gazette Staff Writer

At least three people in the Pittsburgh area has the genetic condition that is slowly turning their muscle to bone.

Pam Fike of Ambridge, who has FOP, devised a hairbrush extender as a way of getting around the immobility in her arms caused by the disease. (Robin Rombach, Post-Gazette)

They never know when the next joint or limb will become locked forever, but each has found ways to deal with the limitations while trying to retain as much independence as possible.

Michelle Kumer of Leetsdale has lived with the condition, fibrodysplasia ossificans progressiva or FOP, for 38 years. She was born with one big toe shorter than the other -- the first hint that something might be wrong. By age 3 1/2 a lump had appeared on her back. When she was diagnosed at age 4 or 5, doctors told her parents that she was the first patient with the condition that they knew of in Pennsylvania.

Both of her arms are locked in bent positions and her right ankle has stiffened, making walking difficult. Kumer said she's "too stubborn" to use a wheelchair, and relies on the support of relatives and friends who carry her into church each Sunday, where she finds the comfort to deal with her struggles.

"It's my faith in God that carries me through a lot," she says.

Pam Fike is 39 and lives a few miles from Kumer in Ambridge, although the two have never met. Her arms and jaw are locked in place, but she still delivers morning newspapers to 43 customers on the route she's had for 17 years.

Accompanied by Midnight, her black cocker beagle, she negotiates the stairs, hills and uneven pavement hoping her shoe won't catch on a rugged patch of sidewalk that could trigger a fall that her locked arms can't brace. She broke her left arm in two places in May when she tripped over a manhole cover. Extra bone is growing back as it heals.

She wants to work more, but finds it difficult to find a job. She worked at a hardware store for about a year until she could no longer reach high enough to stock shelves. She types with one hand -- fast, she says -- but lost a job as a secretary last year when the company downsized.

"The job issue is the hardest for me," Fike said. "I want to work. People take one look at us... they think we can't do the job."

Amy Huchber, 18, of Plum, is a freshman at Penn State University in New Kensington. Diagnosed at age 11/2, she took part in a clinical trial at the National Institutes of Health in Bethesda, Md., where doctors were testing a drug to see if it inhibited bone growth. It didn't seem to work, and her participation ended when she was 5.

She uses a wheelchair now, although she stands during her classes because her body is frozen in a position in which she can't see the chalkboard while sitting, according to her mother, Shirley. Her first semester went well, however. She made four As and a B+.

Huchber is the only one of the three who has met Dr. Fred Kaplan, the orthopedist at the University of Pennsylvania Medical Center who is overseeing several studies to try to solve the mysterious genetic disorder. She went to Philadelphia about four or five years ago to participate in a study, but there weren't any that she qualified for at the time, her mother said.

There is not a local expert who treats all three patients; they rely on an assortment of pediatricians and other doctors as well as medical information on Web sites or other sources to help them through their conditions.

When Kumer and Fike were diagnosed, little was known about the condition, and treatment along the way has been "hit or miss." Kumer, for example, tried physical therapy to relieve the stiffness, but found the activity actually aggravated her condition.

"I'm just being careful" to prevent a fall, said Kumer, who likes to cook and spend time working on arts and crafts projects. "There are times when I do something and nothing happens. I'll do the same thing later and I'll get a flare-up."

The two have made adaptations in their lives to stay as independent as possible. When she could no longer reach her head to brush her hair 10 years ago, Fike designed a hairbrush on a 2 1/2 foot pole with a bicycle handle at the end. She uses it to brush and wash her hair and put on her shirts.

Kumer's brother built her a set of three wooden "mini steps" that she uses to get around.

"I've never accepted [the condition]," said Kumer. "The limitations make it difficult, but I've learned to get around it.

"If something locks up, I find a new way to do what I need to do."



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