Walking for progress

For many years, Tracy Claflin’s primary social outlet was meeting her friends to hike, bike, swim or play soccer.

“Now, when they’re inviting people on a hike, they look at me like, ‘Well, sorry. Want to meet us afterward?’ It’s been really difficult,” Claflin said during a recent interview. “I’m trying to find other things to do.”

In 2004, Claflin, now 57, was diagnosed with multiple sclerosis, an incurable auto-immune disease. But she considered herself lucky—until recently, her symptoms were few and far between, allowing her to maintain her active lifestyle and continue running the Montessori Elementary School on The Esplanade with her husband, Jim. But a few years ago, the heavy fatigue often associated with MS—symptoms vary widely from one patient to the next—became too pervasive for Claflin to work full time, and the couple sold the school.

Last year, her disease reached a new level of severity and she was hospitalized four times.

“It really messed up my whole body,” she said. “Now I have some balance issues. I’m walking now, but I’m not walking far, and tend to drift to the right. I might be in a wheelchair at some point—who knows? It’s day-to-day and becoming that way more and more.”

Claflin’s life has become limited in many respects. She still teaches at Sherwood Montessori, but only for three or four hours a day. She’s forced to stay inside during the day to escape the heat, which exacerbates her symptoms. She can’t commit to travel plans with friends and family.

But she strives to remain an active member of the community. In recent months, Claflin has helped organize the National Multiple Sclerosis Society’s (NMSS) upcoming fundraising walk in Chico, set for next Sunday (April 26).

It’s been more than a decade since MS Walk: North State has been in Chico, said Amy Clark, regional community development manager for NMSS. For the past 13 years, it was held in Yuba City, but the lead organizer there, also an MS patient, became progressively more disabled by the disease and is no longer able to spearhead the event. So Clark, a resident of Paradise, decided to bring the walk back to Chico—specifically, Lower Bidwell Park, which she considers “a much more pleasant setting than the streets of Yuba City.”

Clark’s goal for the event, which she anticipates will attract a few hundred participants from all over the North State, is to raise $36,200. She expects the 13 such walks throughout the region will raise a total of $1.6 million. The money will go toward MS programs, services, financial aid and research.

People like Claflin are hoping for breakthrough treatments and possibly a cure. Meanwhile, she’ll take each day as it comes, though she admits that’s a scary prospect.

“You can’t do the things you used to,” she said, “so it’s really hard to look at your future.”

While much remains unknown about MS, researchers have established this much: It’s an autoimmune disease in which the body attacks nerve cells in the brain and spinal cord, damaging the myelin sheath (an electrically insulating coat around the axon of a nerve cell). The nervous system’s ability to communicate with the rest of the body is thereby disrupted, resulting in a wide range of physical, mental and psychiatric problems. The disease takes several different forms, manifesting either as isolated “attacks” or more consistent symptoms.

Claflin and Clark both suffer from the former variety, also known as relapsing-remitting MS. At times, their symptoms disappear entirely, but always come back—often worse than before.

Notable advancements in the field have been made in recent years, including some in our backyard. In 2013, Dr. Jonah Chan, a neuroscientist with UC San Francisco, won a prize for innovation in MS research for his work in repairing the brains of MS patients. Specifically, Chan invented new technologies to rapidly identify compounds that stimulate the regrowth of the myelin nerve casing.

And last November, the U.S. Food and Drug Administration approved a new medication for relapsing MS, called Lemtrada, which Clark calls a game-changer.

“In a way, it resets the immune system, targets the cells attacking the myelin in your nerves and basically reprograms them,” she explained. “It’s a big-gun medication.”

The FDA approved Lemtrada based on the results of two large clinical trials that “confirmed its ability to significantly reduce relapse rates over two years,” according to NMSS. “One of the studies also suggested that Lemtrada may significantly reduce worsening of disability.”

The medication comes with serious, even deadly, risks. Of the people treated with Lemtrada in those clinical studies, 34 percent developed autoimmune thyroid disorders, while prescribing information for Lemtrada includes a warning about the “potential for serious, sometimes fatal, autoimmune conditions.”

There’s much still to be done, especially for patients with progressive MS—a form that continually worsens with no remission periods—which affects more than 1 million people worldwide. Since progressive MS lacks an identifiable disease pattern, researchers remain baffled about how and why MS progresses. To date, no treatments for progressive MS have been approved by the FDA.

Both Clark and Claflin emphasized that MS Walk: North State is open to the general public and encouraged the broader community to participate.

“Look at polio and all the other diseases we’ve figured out,” Claflin said. “I hope, in my lifetime, they find a cure for this.”