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Thursday

 

"Everybody knows about breast cancer, and I want everybody to know about MS, too"

"Everybody knows about breast cancer, and I want everybody to know about MS, too"

Tricia Lige remembers the first thought she had in 2005 when she was diagnosed with Multiple Sclerosis: "I'm going to end up in a wheelchair for the rest of my life."

Now, nine years later, the Knettishall resident will be walking with her entire family and about 40 others on her team, Lige Lightning in her 10th MS Walk Towson at Goucher College on April 13.

"For some people, the disease progresses quickly," Lige said. "I have been fortunate to remain stable for the last nine years."

The Towson 5k walk benefits the Maryland chapter of theNational Multiple Sclerosis Society and is one of 11 walks throughout the state held each spring. This is the second year the event has been held at Goucher; since it began in 1989, the event had been run at Towson University.

Lige, like most other individuals with MS, didn't know what to do or where to get help when she was first diagnosed.

"A friend of mine suggested I call the Maryland Chapter of the MS Society, and when they answered the phone, all I could think to say was, 'My name is Tricia, and I was just diagnosed with MS.' Immediately, they transferred me to someone who provided support and enrolled me in a program where I was receiving small, manageable packets of information that really helped me understand what was happening to me."

The National Multiple Sclerosis Society defines MS as "an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body," most specifically the spinal cord and optic nerves.

"I think that any major diagnosis can knock someone's world off its axis," Lige said. "I felt overwhelmed and scared when I was first diagnosed ... The society can help answer the questions you don't even know you have yet."

Researchers still do not know what causes MS. It is the number one disabling disease among young people, affecting more than 10,000 people in Maryland and 2.3 million worldwide. Recently, researchers have developed better therapies, including 10 new treatments that have been approved to stop the damage and progression of disability.

Since her diagnosis, Lige has had to take daily injections of Copaxone. With the new treatments that are now available, she is considering a switch to one of the new oral medications.

"It is a big decision to consider changing medications, as the side effects can be pretty strong," Lige said.

This year's ambassador of the Towson MS Walk is Jennifer Cooper, of Baltimore, who was diagnosed in 2005 when she was 18. Like Lige, Cooper had no idea what MS was or how her life might change.

"I was nonchalant about it," Cooper said. "I was stubborn and didn't take anything for about a year and a half."

Cooper started taking Copaxone in 2007, and in 2009 when Cooper had a relapse, she switched to one of the new medications being offered, Tysabri, which she continues to receive through monthly infusion treatments.

Both Lige and Cooper have been diagnosed with relapsing-remitting MS, the most common form that affects about 85 percent of the MS population.

Cooper sees her role as ambassador serving two very important purposes: to educate others about MS and to instill positivity and courage among those who have the disease.

"Last year, I got a little frustrated because I would tell people about having MS and they didn't know what it was. I got so frustrated that I created a Facebook page," Cooper said.

Cooper's page, "I Give A DAM (Determination, Awareness, MS)," currently has 390 subscribers and is filled with encouragement and support.

"If you ... have a negative outlook, you are going to have a horrible life," Cooper said. "I went through those tough times where I was depressed and in denial — and those were the worst times of my life.

"That's when everything went downhill. I decided that you need to see the good in everything. That's when you get a better outlook about your own life and everything around you."

As ambassador, Cooper will give a short speech at the beginning of the race, cut the ribbon to begin the event and meet with individuals for pictures and encouragement.

"Everybody knows about breast cancer, and I want everybody to know about MS, too. So many people, when they hear you have MS, they say, 'What's that?' That's why everybody needs to join us. I would not have the quality of life if it wasn't for walks like this," Cooper said.

Barbara Shelton, of Towson, has been participating in the Towson MS walk for the last 12 years. She has served on the planning committee and as a team leader for several groups. She has family members and friends with MS, and walking in the annual event is her way of showing support and spreading awareness about the disease.

"I think that many people view MS as an obvious disease that they can see, that everyone who has MS is in a wheelchair and has difficulty living an independent life. The truth is nothing like that," Shelton said.

Shelton said most of the people she knows with MS work full time and live full, productive lives.

"They have significant challenges and live with the knowledge that the disease can suddenly become more difficult to deal with at any time," Shelton said, "but you can't see the impact the disease has upon them. People don't often understand the unseen physical challenges that MS causes."

So far, the Towson event has raised over half of the intended goal of $160,000, which is more than $10,000 over last year's final amount of nearly $150,000 raised, according to Melissa Ward, community relations manager of the National MS Society, Maryland Chapter.

For this year's walk, Lige's Lightning has already raised nearly $6,000; their goal is to raise $10,000, as they have done nearly every year since 2009.

"I hope that participants who have MS will be energized by the support of family and friends," Lige said. "The disease is unpredictable, and because it's a disease of the central nervous system, there are many effects it can have on the body. Doing the MS Walk is one way to have some control over our future because we're supporting the society's research, advocacy and educational efforts."

The walk "is a reminder that we need to be vigilant in supporting the society so they can fund research to develop new treatments and reach the ultimate goal: a cure."
Story Source: The above story is based on materials provided by The Baltimore Sun  Note: Materials may be edited for content and length

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