Is it really true that there is more MS in the Northwest?

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By Keith Seinfeld

We’ve all seen the billboards and giant posters hanging off the sides of buildings: “The Northwest has a higher incidence of Multiple Sclerosis than most anywhere on Earth.”

But do we really? Turns out the answer is more complicated than the awareness campaign that got everyone talking about MS in the Northwest.

It’s a disease that seems like it could hit anybody, at anytime. Consider Maureen Manley. She lives in Kirkland now, but in 1991, at age 26, she was living her childhood dream – racing  for the U.S. cycling team, and competing in that famous race in France:

“It was during one of the stages of the women’s Tour de France. My vision blurred so badly after riding really hard in a climbing stage that I lost my sight completely, and rode my bike off the road and crashed.”

That’s how she discovered something was very wrong. She went home, had some testing, and got the news – she had M.S.

“It was terrifying,” she said. “I'm thinking, ‘Okay, I have achieved being a world class cyclist, and now it’s going to be a road to a wheelchair.’” 

 During that first year, she was walking with a cane, and nearly blind. And she was wondering, Why me? Why now?

 

The MS awareness campaign

Maybe you saw those billboards and posters a few years ago: Dramatic photos implied it might be something in the environment, with headlines like:

“Is it the rain?”

“Is it the trees?”

“Is it the water?”

“Is it the air?”

Then the assertion:  “The Northwest has a higher incidence of Multiple Sclerosis than most anywhere on Earth.”

 

Most in the world?

The ad campaign promoted the local chapter of the National Multiple Sclerosis Society – and it was pretty successful as PR, but the awareness campaign never answered the questions – “Why here?” and “Is there really more MS here than anywhere else?”

“Well, the short answer is we don’t know,” said Dr. Jim Bowen, who’s like the godfather of Multiple Sclerosis specialists in the northwest. He works at Swedish Medical Center in Seattle and has been focusing on MS for 25 years.

He seems to answer questions about MS with a “Yes,” followed by a “But.” 

Yes, he says there is a higher rate of MS here than in California, for example.

And, “MS is more common in the north. It’s more common in certain ethnic groups, especially those from northern European backgrounds.”

So, having so many Scandinavian immigrants here could be a reason for more MS.  But, he says MS rates in the Northwest are similar to any northern state, from here to Maine. In fact, it seems the highest rates of MS cluster on every continent at the 49th parralell.

 

What they do know about MS

Scientists know more about what happens after you get MS. Something goes wrong with the immune system, and certain immune cells start targeting the brain and spinal cord. When the immune cells attack, they leave little scars, and the nerves don’t function right.

But what makes the immune system go haywire?

 “They’ve looked at all sorts of things,” says Dr. Bowen, who tracks much of the published research. “Soil, water, rainfall, pollution, but none of those have panned out thus far.”

 There are other theories. For example, it’s not living in the north that raises your risk. To be precise, it’s whether you grew up in the north.

The latest theory says maybe there’s a virus that’s more common in the north, and if you inherited the wrong DNA, then the virus can damage your immune system. (The virus that causes mono, called Epstein-Barr, is currently Prime Suspect Number One.)

Even without knowing why MS strikes, medical researchers have come up with eight drugs that can help control the disease and limit the damage to nerves. They’re expensive, but that’s encouraging more drug development.

 “There are 75 drugs I was able to identify that are in human studies, right now. And you'd be hard pressed to find another disease that had that many,” says Dr. Bowen.

 

Back on the bike (with meds)

Maureen Manley, the former world-class cyclist, injects herself every day with one of the drugs. Like all MS patients, she also learned what makes her symptoms worse – getting too hot, or too cold, or too stressed.

In 2003, twelve years after her dramatic crash in the Tour de France, she cautiously snapped her cycling shoes back into the pedals again. Every day, she rides a training bike, in her home in Kirkland. When she climbs on, you can see the relief in her body and her face immediately brightens.

“I really feel like I become one with the machine. So, it’s an amazing feeling of freedom really, because I can go. I can go. And I'm really not limited.”

 For walking, she is still limited, because of a weak left foot.  But after twenty years with MS, she’s back riding in events, with a team, and learning how much she can do -- without ever knowing why she’s sick.