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Tuesday

 

Finding answers: Woman on quest to educate about MS




























Melinda Smith was on vacation when the symptoms began in July 2006: a nagging headache, nausea, burning skin, and then tingling on one side of her face.

Those early symptoms led to a diagnosis of multiple sclerosis, a process that took years and put the Burlington native in the care of doctors at Johns Hopkins University. It also put Smith on a mission to educate the public about neurological diseases and to found Mulligans Fore MS, a nonprofit dedicated to raising money for research at Johns Hopkins.

Mulligans Fore MS coordinates biennial charity golf tournaments and, after pairing with Elon University’s neuroscience club, educational programs featuring Johns Hopkins doctors and researchers.

The next event is 6 p.m. Monday at Elon University’s Koury Business Center. It will feature a lecture by Dr. Adam Kaplin, assistant professor of psychiatry and neurology. Kaplin will speak about cognitive impairment and depression related to MS and transverse myelitis, the latest in stem cell research, and his personal motivations related to chronic neurological diseases. Elon Coach Craig Edwards, who recently received a liver transplant, also will speak about the importance of organ donation.

The event is free and open to the public, but donations to Johns Hopkins Project RESTORE through Mulligans Fore MS are encouraged. Project RESTORE raises money for neurological research and treatments at Johns Hopkins.

“Since my diagnosis, many people have reached out to me, and I realize there are a number of people in Alamance County who suffer from multiple sclerosis,” Smith said. “MS is still considered an uncommon illness. And MS can be difficult to diagnose because it mimics other diseases.”

Scientists are still unsure what causes MS and continue to research numerous possible causes and treatments.

 SMITH’S JOURNEY TO diagnosis was exceptionally difficult.


Her symptoms continued into fall 2006, and she began seeking medical treatment. No one had a diagnosis. She suspected MS, and sought answers from 25 doctors that next year, but none could confirm she had the debilitating neurological disease. One — at a “highly respected teaching university” — told her she didn’t have MS and that she was depressed, and then turned her away.

“I knew something was really wrong. When you go to doctor after doctor, … you walk out the door and think, ‘What do I do now?’ ” Smith said.

In a sad irony, she hit so many dead ends she eventually did become depressed.

Exasperated, she and her husband, Rusty, turned to Johns Hopkins University in Baltimore. There, Dr. Justin McArthur, Johns Hopkins’ chief neurologist, offered something Smith hadn’t had before: support.

“He said, ‘I’m not sure. I think it’s MS.’ But he said, ‘I will work with you until we figure this out,’ ” Smith said. “For a year, he and I worked together. It was a relief when the diagnosis came. Then I knew I could start medication and therapy.”

She said doctors and medical departments at Johns Hopkins are more collaborative and better informed about individual patients’ treatments and conditions, which makes their work more efficient and more effective than at other facilities she’s visited.

 NOW, SMITH SAYS, she feels better than she has since 2007. She’s undergoing treatment, overseen by Johns Hopkins neurologists and psychiatrists, and her condition is listed as relapse-remitting — meaning her symptoms return, but her body recovers.


Smith worked quickly to turn her diagnosis into progress, to connect patients here and to return support to Johns Hopkins.

“I wanted to do something local. Considering the costly amount it takes to fund research, and that our family is unable to directly gift those large amounts, we reached out to the community and founded Mulligans Fore MS. However, it’s very important to realize that any and all gifts help research.” Smith said. “It’s a passion I’ve found that’s very rewarding.”

At Elon University, Amy Overman is the faculty advisor to the neuroscience club, made up mostly of students involved in the school’s neuroscience minor. One of the club’s goals is to raise money for charities involved with neurological disorders and diseases.

Monday’s event will be the second with Project RESTORE and Mulligans Fore MS, which a past neuroscience club president coordinated in 2013, Overman said.

Smith plans to continue advocating for research and treatment. She credits her friends and family for their support in co-founding Mulligans Fore MS in 2009 with her friend Heather Hauk. She’s also grateful to her doctors and team at Johns Hopkins for their efforts and her improved medical condition.

“We will overcome these challenges. You have to stay positive. That’s why you educate,” she said. “One day, we’re going to find the answer.”


IF YOU GO

Dr. Adam Kaplin, Johns Hopkins University assistant professor of psychiatry and neurology, and Elon University coach Craig Edwards will speak Monday at Elon University’s Koury Business Center.

A meet-and-greet begins at 5 p.m. The program begins at 6 p.m. It’s free and open to the public. Donations are encouraged and will go to researching multiple sclerosis, transverse myelitis and other neurological diseases.

The event is hosted by the Elon University Neuroscience Club, Johns Hopkins Project RESTORE and Mulligans Fore MS, a local nonprofit that raises money for Johns Hopkins research.

For more information, visit www.mulligansforems.org and www.hopkinsmedicine.org.

Story Source: The above story is based on materials provided by THETIMESNEWS
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