Rare disorder changes life of Moorhead womanAnyone who watches Brenda Rehder closely can see hints that she has difficulty walking. In fact, she has special shoes equipped with braces to help with her handicap.
By: Patrick Springer, The Forum
Brenda Rehder recently found a note, written in scolding capital letters, left on the dash of her car: “You! are abusing the handicapped parking program. Shame.”
To the casual observer, Rehder is the picture of health and vitality: trim, fit, enthusiastic.
But anyone who watches closely can see hints that she has difficulty walking. In fact, she has special shoes equipped with braces to help with her handicap.
Unseen, a rare spinal cord disorder is causing her muscles to become progressively weaker and more spastic.
So rare that Rehder, a 35-year-old single mother, is one of only an estimated 24,000 people in the United States and Canada with the condition.
Some day the weakness in her legs will require her to use a walker or maybe even a wheelchair. There is no way to predict the whims of the disease.
And there is no cure. Because the disease is so rare, only a few researchers are working to unlock its mysteries.
In Brenda Rehder’s race against the ravages of time, the tortoise of medical science is no match for the hare of the disorder.
It started as pain, a stubborn aching in her legs.
Finally, when the throbbing failed to subside, Rehder went to the doctor.
Tests ruled out rheumatoid arthritis but gave her no answers.
The pain continued. Then it got worse, a burning sensation that kept her awake at night and making her work as a dental assistant almost unbearable at times.
“It was to the point I would go home and bawl,” she said.
She went back in search of medical treatment, still expecting a solution for her malady was readily at hand.
“I thought they were going to tell me I needed arch supports, and they sent me to a neurologist,” she said.
Tests eliminated multiple sclerosis, but the neurologist had a sobering diagnosis. Something called hereditary spastic paraplegia, or HSP.
Despite its rarity, Rehder knew all about HSP – the very disease that had forced her father, Ron Mastrud, to retire early from his job with the Happy Hooligans.
The surprise in the Mastrud clan was that a female had inherited the affliction, which previously had only struck males in the family.
Finally, her doctor found a drug to relieve her pain, a combination muscle relaxant and anxiety medication. In the four years since her diagnosis, Rehder’s walking ability has gradually declined.
To learn more about the disease, she attended a meeting last year of the Spastic Paraplegia Foundation in St. Louis.
While there, she met Dr. John Fink, a University of Michigan researcher, the leading expert on the disease. He told her the only hope for a cure was through greater public awareness and more research money.
A bit of added motivation came from some good-natured ribbing Rehder received from others at the convention, who teased her about her North Dakota roots following a sketch by television host Conan O’Brien poking fun at her native state.
She returned home to Moorhead and raised $5,000 for the foundation from relatives and friends, many of them colleagues in dental offices in Fargo-Moorhead.
Rehder is hoping that the broader community, if made aware of the rare disease and the need for research support, would step forward with contributions.
“I was hoping that Fargo-Moorhead would help me,” she said.
Maybe even enough that someday the annual meeting of the Spastic Paraplegia Foundation would be in Fargo-Moorhead.
At the convention, Rehder and her fellow HSP patients agreed that it would be helpful if some celebrity had the condition, therefore attracting public attention and funding.
She took her turn at the karaoke microphone, joking that she’d become a singing contestant on the popular television talent show “American Idol” to help raise awareness.
The song she sang: Nancy Sinatra’s hit, “These Boots Are Made for Walking.”
Since 2002, supporters have raised $2.5 million for research toward a cure for hereditary spastic paraplegia and primary lateral sclerosis, a related spinal cord disorder.
Scientists have identified gene mutations that cause the disorders but have yet to unlock the disease mechanisms.
In the first round of research grants, in 2003, the foundation received only a handful of proposals. Last year, it was able to fund five of 20 proposals, said Annette Lockwood, a board member on the foundation from Fairfax, Va.
“It wasn’t being researched by other groups,” said Lockwood, herself a patient with HSP, which is prevalent in her family, as it is in Rehder’s.
“It can be very different from family to family,” Lockwood said, referring to the incidence, age of onset, and virulence of the disease.
Any child born in a family with HSP has a 50-50 chance of inheriting the disease, Lockwood said, which often shows up in middle age.
Rehder, who is determined to do what she can to boost research funding, knows any cure might come too late to benefit her. But she has a 6-year-old son, Coleman, who might grow up to discover he has inherited the disease from her.
“I just have to do something,” she said. Not knowing if Coleman has the disease, or even when it will strike, keeps her awake at night.
How to help
Checks can be made out to the Spastic Paraplegia Foundation and sent to any First International Bank & Trust branch in Fargo-Moorhead or mailed to the branch at 1350 13th Ave. E., West Fargo, ND 58078-3346.
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