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Discussing NMO Research and Advocacy

700 walk for MS cure : 500 in Santa Barbara diagnosed with MS

By HANNAH RAEL, NEWS-PRESS CORRESPONDENT

More than 700 participants walked as far as 10 kilometers along the shores of Leadbetter Beach on Saturday morning for the 2012 Walk MS: Santa Barbara to raise funds for researching a cure for multiple sclerosis.

“We think that the medical research is very close to advancing the science and so it inspires all of us to want to do more because there’s an immediacy,” said Larry McEwen, a member of the board of trustees of the Southern California and Nevada chapter of the National MS Society, which organized Saturday’s walk.

Mr. McEwen told the News-Press that he lost his wife to multiple sclerosis and that, although new drugs have come out in the last decade to alleviate symptoms, there is no cure or even a known cause for the disease.

That is disappointing news for more than 500 people and their families in the city of Santa Barbara who have been diagnosed with multiple sclerosis, said Jeanette Chian, director of the Channel Islands Region of the MS Society.

“With MS your immune system is overactive and it attacks the protection of your spinal cord and then, depending on where the damage has been done, that determines your symptoms,” said Ms. Chian.

Because the disease manifests in various ways, it can be hard for others to understand what an MS sufferer is going through.

“It’s a disease that fluctuates over the course of it for people, and they can go in and out of having either fatigue and different symptoms of it, but they look like they’re doing OK,” said Susan Bradley, interim chapter president of the Southern California and Nevada chapter of the National MS Society.

For Kim Phillips, it all started 25 years ago after she had graduated college. She noticed blurred vision — a common introductory onset symptom — and thought she just needed glasses.

Instead, she was diagnosed with multiple sclerosis and told there was nothing she could do about it.

“It was pretty scary,” Ms. Phillips said. Now approaching 50, she is a National MS Society board member and hopes that one day no one will have to go through the same pain she has. Ms. Phillips now uses a scooter and said it helps her openly discuss her condition, while others with multiple sclerosis hide their pain. “It is invisible for the most part. Even if somebody looks healthy and seems healthy, you don’t walk in their shoes,” she said.

Dan Behne of the Guthy Jackson Charitable Foundation said doctors are still working to understand the disease.

Mr. Behne, along with a team of about 50 others, attended the walk to raise awareness about neuromyelitis optica, or NMO, a rare disease of the central nervous system that was thought to be a type of multiple sclerosis until recently. He said it was important to be a part of the MS Walk because 90 percent of the 800 patients he has come in contact with were first diagnosed with multiple sclerosis before finding out they actually had NMO. “A lot of these patients were once part of an MS Society because they were diagnosed that way and then when they were diagnosed with NMO, they felt like they shouldn’t join these walks,” Mr. Behne told the News-Press. He said it is important that people diagnosed with MS rule out NMO, through a simple blood test, because treatments for MS may be ineffective for NMO or make the symptoms and disease worse. “We want people diagnosed correctly the first time,” he said, adding that doctors should not be blamed because the disease is so rare that many are not aware of it.

Mr. Behne said the NMO group members raised more than $5,000 for the National MS Society because they believe MS research will complement NMO research.

Ms. Chian said the NMO group was one of the most generous participating teams, but that she was thrilled with the gifts of other attendees. The fundraising goal for the local walk was $75,000, and Ms. Chian said more than $65,000 had been raised by the start of Saturday’s walk. The MS Society is still accepting late donations. More information can be found at walkcal.nationalmssociety.org.