More MS news articles for Oct 2001

'West Wing' Turns Spotlight On Disease Many Suffer in Shadows

Boston Herald- October 10, 2001

Eight years ago, he was diagnosed with multiple sclerosis.

Because so much is unknown and misunderstood about MS, only his family and closest colleagues know. He has to keep it a secret because people are relying on him. He is, after all, the president.

That's the plot of the NBC series "The West Wing." The season debut tonight (on WHDH-TV Channel 7) will explore the aftermath of President Josiah Bartlet's announcement that he has lied about his MS to keep it a secret from voters.

But this story is not about "The West Wing." It's about a real senior executive in Boston who has MS and has kept it a secret for eight years for fear of negative response from staff and clients.

"Because people don't know how to react," said the man, who does not want his name, his company or even the business he is in revealed.

"That's the No. 1 thing that leads you to not tell people," he said. "That could be a distraction in terms of my ability to discharge my responsibilities."

Multiple sclerosis is an incurable disease of the central nervous system. The cause is unknown and symptoms vary so widely, it is extremely difficult to diagnose.

Symptoms often go into remission for an unpredictable length of time. This version of the disease, Relapsing-Remitting MS, affects 70 percent of sufferers.

Until the disease flares up again, this executive is perfectly fine and capable of performing his duties. And he probably will continue to be able to work after the symptoms return.

"The one thing that makes it so insidious is that you don't know how it's going to affect you," he said.

That's why he and many other MS patients have decided secrecy is both prudent and the easiest way to live a normal life. No one understands that decision better than the professionals at the MS Society.

"The stability of the company might be threatened because of misconceptions about the disease," said Steve Sookikian, director of communications for the MS Society's New England chapter. "There can be backlash."

"There's a multitude of tentacles to this," the executive said. "Obviously, it had an emotional impact as well as physical. I didn't understand what MS was. I had to have my own awareness raised to grasp what this meant for my own ability to have a normal life and the impact on my career."

A primary source of information is the local MS Society chapter, which recently launched a corporate awareness program to explain MS to businesses. Susan Strachan has signed on as corporate awareness manager.

"I was diagnosed with MS a year-and-a-half ago, after I lost my eyesight to optic neuritis," said Strachan, who has since regained partial vision. "I have finally come to acceptance and now have volunteered to become Boston's 'poster woman' for the disease."

Her goal is to create MS awareness among businesses by asking for corporate ambassadors - not necessarily people with MS - to be liaisons between their companies and the MS Society chapter in Waltham.

"Think about the human resources director," Sookikian said. "A man comes up and says that he has MS. They may never have dealt with the issue. Who do they turn to? It's us."

The attention MS is getting on "The West Wing" is helping the cause. Writers are working closely with the Southern California MS Society chapter to ensure accurate information in the story line.

In the meantime, the anonymous executive's symptoms are kept at bay with daily injections of Copaxone, one of three drugs recommended for use in the disease's early stages. On television, President Bartlet takes Betaseron.

"Obviously, in the back of my mind," the executive said, "I wonder, will it shorten my number of years of earning potential, and what kind of decisions will I have to make if it takes a more virulent course?

"I don't think it has any impact on my ability to be a successful business person. If anything, it's given me a focus that I may not have come to had I not been diagnosed. I am very focused on how precious each day is."

Dana Bisbee Talk Back

©2001 Boston Herald