Karen Wright recalls the first time she knew something was wrong with her. It was 1996, and she woke up with her head feeling “as though it were on crooked.”
She didn’t know she had dystonia.
In fact, she wouldn’t be diagnosed for the disorder for another four years.
All she knew at the time, and more so over the next few years, was that something was amiss.
At first, she had problems turning her head. Over the next few years, she began getting spasms in her neck, arms and legs.
Physicians, chiropractors, even a natural herb doctor all were baffled by her condition.
The muscle spasms in her neck and back often were unbearable.
At one point, she even was referred to a psychiatrist who prescribed antidepressants used to treat mental problems.
Wright, 56, of Montoursville, eventually found a local neurologist who was able to properly diagnose her problem as dystonia, a disorder that causes muscles in the body to contract and spasm involuntarily.
Her diagnosis later was confirmed at Johns Hopkins Hospital in Baltimore as cervical dystonia, which affects the neck and shoulder muscles.
Other types of dystonia can affect the vocal chords, hands and fingers, as well as the face, jaw and tongue and even the eyelids.
In addition, generalized dystonia affects many parts of the body simultaneously.
There is no known cure for dystonia, which is the third most common movement disorder, according to information from the Dystonia Medical Research Foundation.
Wright has found some relief from her condition through expensive botox injections, which she receives several times a year.
“I’m much better now than I was,” she said.
Otherwise, she takes no daily medications for dystonia. But it is a disorder she lives with and endures daily.
“Some days are worse than others,” Wright said. “Probably one of my worst days are when I get in the recliner with a heating pad.”
For many years, Wright worked as a secretary but had to give up that job. Sitting for long periods of time was impossible and her hands grew numb.
Rebecca Sharp, of Montoursville, said Wright’s ordeal is not an altogether unusual story.
Many dystonia sufferers, she noted, remain in the dark about their disorder for even longer than Wright did.
“I’ve known people who wait 20 years,” she said.
Sharp, whose father suffers from dystonia, has become active with the Dystonia Research Foundation.
She often blogs about dystonia, reaching out to people across the U.S. and throughout the world.
Sharp, who has streaked her dark hair blue to bring awareness to dystonia, said more education is needed.
She’s known too many cases of people who have been misdiagnosed.
“They (doctors) think it is all in your head,” she said.
A few years ago, Wright went to the emergency room after falling and dislocating her elbow.
An attending physician, however, asked if Wright had hurt her neck.
Wright said she it was merely stiff, the result of her dystonia.
“He had no idea what I was talking about,” she recalled.
Instead of having an X-ray of her arm, one of her neck was done.
Dystonia has both a genetic component or can result from a health condition, including stroke and physical trauma. It also can come about as a side effect of certain medications.
There is no known cure for dystonia, although botox, certain oral medications and even surgery can relieve symptoms.
Sharp said her father is scheduled to undergo a deep brain stimulation procedure that could provide some relief.
“It will re-fire his brain,” she said.
Dystonia is almost never fatal, according to the Dystonia Foundation.
However, it may occur as a symptom of degenerative diseases, which can affect a person’s life span.
Wright cannot pinpoint the cause of her disorder.
She recalled falling and injuring herself several months before the onset of her condition. She also noted that her father had Parkinson’s disease.
Kim Myers, of Montoursville, has seen Wright – her sister – suffer from the disorder over the years.
“The problem is, stress exacerbates it,” she said. “It’s just a constant struggle with your own body.”
Wright, for her part, said she tries not to let her medical problem get her down.
She gets out a lot and walks, but is limited to certain activities.
Because she cannot move her head readily to one side, she doesn’t drive a lot.
“My faith has helped,” she said.
Her sister agreed.
The sisters feel it’s no coincidence that they became acquainted with Sharp, a strong advocate on behalf of dystonia sufferers.
Sharp moved to the area from Alabama and soon joined their church, Faith United Methodist in Montoursville.
It was, Myers said, God’s mysterious way of bringing good into Wright’s life, and likely other lives as well.