Every day, Bloomingdale resident Erin Zwirlein grabs a cane and
goes for a one-mile walk.
She returns to her townhouse tired, a bit unsteady, but happier
than she ever thought possible.
Zwirlein, 36, has the worst kind of multiple sclerosis: the
"secondary-progressive" type, defined by a steady and relentless worsening of
the disease without any periods of improvement.
As recently as last year, the disease wouldn't let her complete a
one-mile walk. Even a shorter one could leave her too tired to stand up.
The difference between then and now is that today, Zwirlein is a
participant in a clinical trial of a new drug that doctors hope will be the
first to offer viable relief to people with her type of MS.
"I feel so good," she said. "It's like I'm getting my life
back."
Zwirlein doesn't know for sure that she's actually getting the
drug; half of the 510 patients in the trial get the drug and the other half, a
placebo. But she feels good about her chances.
"I'm a positive person," she said. "But I don't think my brain
could make these improvements happen on its own."
Dr. Daniel Wynn, the Northbrook physician who invited Zwirlein to
participate in the trial, said the drug is one of the most exciting developments
he's seen in his 30 years of involvement with MS research.
Up to now, the only existing treatment for secondary-progressive
MS is a chemotherapy agent that has limited use because of its toxic effects on
the heart. In earlier trials, the only side effect that the new drug has caused
is a harmless and temporary flushing of the skin, he said.
"This could be a gigantic advance," Wynn said. "To have something
that will help those with the worst form of a terrible disease is a very big
deal."
First symptoms
MS remains a mysterious disease, even though roughly 200 people
are diagnosed with it each week. Medical experts believe that in MS patients,
the body's immune system inappropriately attacks the healthy tissue that coats
nerves in the brain and spinal column. The result is an unpredictable,
wide-ranging array of symptoms that includes abnormal fatigue, tremors, vision
problems and muscle failure. There still is no cure for the disease.
Zwirlein's symptoms first appeared in 1999, when she lived in
Wisconsin with her husband and infant daughter.
She experienced bouts of disorienting vertigo. She had trouble
keeping her balance. And in a particularly frightening instance, she dropped her
baby.
"My arms just gave out," she said. "It was like I didn't have any
control. I knew that wasn't normal."
When the diagnosis came, it hit Zwirlein hard. She fell into a
near-depression, wondering if her life was coming to an end.
"I went through a period where I'd just start bawling," she said.
"It was very bad."
Soon, though, Zwirlein realized she had a choice: Let the disease
take over her life, or fight. She decided to fight.
"I'm not the type to just do nothing," Zwirlein said.
So she worked with her doctors on a drug treatment plan. Like most
people with MS, Zwirlein was initially diagnosed with the "relapse-remitting"
form, in which MS "flare-ups" alternate with periods of recovery. The FDA has
approved a number of drugs that can slow the frequency and intensity of attacks
in people with this type of the disease.
While undergoing treatment, Zwirlein stayed active. She went back
to work, taking a job as a welder in a factory. And she wouldn't let anyone feel
sorry for her.
"It might have been a pride thing, but I didn't want anyone to
treat me special," she said. "We had a scooter in our garage, but I refused to
use it. During a trip to Ireland, I refused to get in a wheelchair, no matter
how tired I got. I wanted to show everyone that I was still alive, even though I
had this disease."
Zwirlein's fight hit a roadblock when her marriage began to
crumble. In 2004, she left her husband and brought her daughter, Morgan, with
her to Bloomingdale. The move put her six hours away from her doctors, left her
without a job and sparked a stressful custody battle with her husband.
At the same time, Zwirlein's symptoms worsened. The leg brace
she'd been wearing for support was no longer enough; she often had to use a cane
when she walked. Occasionally, Zwirlein became so weak that she could move only
by crawling on the floor.
Searching for a doctor close to home, Zwirlein discovered Wynn's
medical office, Consultants in Neurology. She underwent a screening, which
revealed some bad news: The disease had advanced to the secondary-progressive
stage.
Still, Zwirlein didn't give up hope. She wasn't about to let the
disease ruin the new life she was trying to create for herself and Morgan. When
Wynn told her about the clinical trial, she jumped at the chance.
"I told Dr. Wynn that the one thing I wanted was to run again with
my daughter," Zwirlein said. "I would do anything to make that happen. I know
that the trial is a roll of the dice, but Morgan's suffered enough through all
this. She's probably suffered most of all."
'You can't give up'
The drug being studied in the clinical trial is known as MBP8298.
In earlier trials in Canada and Europe, it has shown promise as a treatment for
secondary-progressive MS.
"It appears to slow the progression by five years or more," Wynn
said. "That would have a huge impact on people with this form of MS. It could
mean the difference between using a cane and using a walker. Or using a walker
and using a wheelchair."
Wynn said that the drug seems to defuse the immune system's
impulse to attack healthy tissue, similar to how allergy medications stop the
body from reacting to pollen or ragweed.
It takes just a few minutes to administer the drug via an IV, and
it has not produced any serious side effects so far, Wynn said.
The trial is scheduled to last two years, but Wynn hopes the FDA
will approve the drug early once results from the Canada and Europe trials are
finalized.
Zwirlein reports that since starting the trial in January, she
feels stronger and walks better. She still wears a brace, but she sometimes can
complete a one-mile walk without the help of a cane.
"I can't quite run with Morgan yet," she said with a laugh. "But
I'm getting there."
Zwirlein hopes that her battle with the disease will inspire other
MS patients to keep up the fight, even when things look grim. Toward that end,
she's written an article for a medical magazine that takes a humorous look at
her experiences.
"You can't give up. You have to keep up the drive to make yourself
better," she said. "I sometimes feel like God gave this disease to me because
other people just couldn't handle it."
Zwirlein misses working, and getting a job remains at the top of
her priority list for the future. She knows it will be tough, especially because
of persistent misconceptions about her disease.
"It's funny - people think that your brain doesn't work anymore,
that you can't do anything, that you won't strive for anything," she said. "I
hope I can show people how wrong that is."
