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Wednesday, Dec. 17, 10:39 a.m.
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Former Miss Teen Maine talks about struggles with Marfan’s Syndrome

Upon beginning her tenure at the University of Maine just over a year ago, assistant professor for the School of Biology and Ecology and member of the Maine Center for Research in Science, Technology, Engineering and Mathematics Education Michelle Smith, Ph.D., began receiving misconstrued emails from people looking for someone who shared her exact name. According to Smith, this sort of occurrence was to be expected, with such a generically common last name.

Out of pure curiosity, Dr. Smith Googled “Michelle Smith, Maine” and found results for Maine’s 2008 pageant winner of Miss Teen International. After further investigation of her namesake, Dr. Smith realized the woman had an incredible story, one that was considerably related to genetics — Dr. Smith’s field of expertise at UMaine — and contacted her in the hope that she could serve as a guest speaker.

On Feb. 14, the potential benefits from this spontaneous connection were successfully fulfilled when Michelle Smith and her mother, Blue Smith, spoke to Dr. Smith’s BIO 350 genetics class.

Michelle Smith was diagnosed with Marfan syndrome in 2003, at the age of 10. From that point, on, Smith was told she could no longer play sports. She has since developed other disabilities, including scoliosis and kyphosis, that are directly related to Marfan’s, but she has also been a strong, contributing member for the National Marfan Foundation, a primary resource for education and research surrounding Marfan syndrome.

According to NMF, Marfan syndrome is a disorder of the connective tissue, affecting various parts of the body, including the heart, blood vessels, bones, joints, eyes, lungs and skin. One in 5,000 people have Marfan syndrome. Typical signs of Marfan’s include a tall, thin stature with low muscle tone and unusually long extremity length along with spine and chest bone curvature, and flat feet.

Smith talked about her initial reaction to the diagnosis in a NMF webisode from last year:

“To actually have an answer to what was wrong with me… that was a sigh of relief,” Smith said.

“I’d go down the tunnel slide on the playground, come out and be passed out. Then wake up with all the teachers surrounding me and try to figure out what’s wrong.”

In just about 75 percent of cases, Marfan syndrome is inherited genetically through the parent via autosomal dominance. In Smith’s case, the syndrome was passed on through spontaneous mutation, which accounts for just over 1/4 of those affected — her family was not documented to have had any history with the disease prior to her birth.

Smith’s specific diagnosis cites three different parts of her connective tissue: the two majors are eyes and skeletal, and her minor is heart.

Despite many potential setbacks, Smith has been nothing less than impressive with her achievements. She was named NMF’s youngest Silver Service Award recipient in 2006 and won both Key Club International’s Distinguished Service Award and NMF’s Kid With A Heart Award in 2007.

Then in 2008, after taking a year off from beauty pageant competition, Smith beat out six other girls to win Maine’s Miss Teen International.

Smith’s compelling story led her to being interviewed on Fox News, meeting country music artist Carrie Underwood and being afforded many other extraordinary opportunities.

 

According to Smith, she feels like she’s been one of the lucky ones.

“I have good days and bad days, just like everyone else, but I haven’t faced the multiple surgeries that many of my friends have,” Smith said. “Some of these friends I lost to Marfan’s.

“I feel honored to be able to raise awareness. If I can make one little girl feel better about herself … if I can show them how to embrace their differences rather than be ashamed of them … that is great day … I’ve done my job.”

In a letter of recommendation written for Smith by NMF’s fundraising chair Heather Floyd, Smith’s connection with the pageant community, an audience connection precedingly untapped, is highlighted.

“Despite the sometimes difficult and painful nature of [Marfan syndrome], [Smith] is thriving and paving the way for others to follow. She is, indeed, living successfully with Marfan syndrome,” Floyd wrote.

Perhaps Smith’s greatest accomplishment in working with the NMF was her Hands Saving Heart campaign in 2008, which sought to help people recognize the common physical characteristics of those affected by the syndrome. In this campaign, Smith provided easy ways for school nurses and other public medical specialists to look for its often unnoticeable symptoms.

Smith’s message, the lack of diagnosis can be fatal. Jonathan Larson, composer and writer for “RENT” — Broadway’s ninth-longest-running show of all-time — brought lots of attention to the seriousness of the syndrome after his death, in 1996. Although undiagnosed, the Pulitzer Prize winner is believed to have suffered aortic dissection — a result of complications with Marfan syndrome the morning of his show’s opening night at Off-Broadway in New York City.

Smith says those with Marfan syndrome are at a 250 percent greater risk of suffering aortic dissection than the general population. Even today, half of all aortic dissections are discovered too late, at the autopsy table.

“I was misdiagnosed, or under diagnosed, for five years,” Smith said. “It doesn’t have to be that way. If you learn to recognize the traits and symptoms of Marfans, you can save a life: fact.”

Notwithstanding her sincere devotion to NMF and everything surrounding Marfan syndrome awareness, Smith is not hesitant to deny any inclination this syndrome defines her life.

“Marfan syndrome does not define me,” Smith says. “It is simply nothing more than a genetically influenced trait much like my brown hair or hazel eyes. I choose to live with Marfan’s, not for it.”

In her lecture to Dr. Smith’s class, Smith touched on what Marfan’s is, how to recognize it, the syndrome’s most common characteristics, and recent studies from researchers across the globe.

Dr. Smith says the best part about the lecture was the Q-and-A with students: Smith’s mom, Blue Smith, was able to add a special perspective on many questions having to do with life and family interaction.

“I am grateful to [Dr. Smith] and her genetics class for giving me the opportunity to speak with them, on Valentine’s Day during [National Marfan Awareness and Have Heart month], about the disorder I and many, many others live with,” Smith said. “They were truly interested, asked insightful questions and treated me with utmost respect.”

 

Smith says speaking to students her age was, in some ways, intimidating.

“I read from my notes a bit too much, in fear that I would get a fact wrong or forget something,” Smith said. “I do better when I speak extemporaneously.”

Zoe Kreitzer, a fourth-year student, said Smith’s lecture was “eye-opening.”

“I’ve looked into midwifery as a career, and to understand the ramifications that genetic variations can have on new life and families responsible for it … it’s profound,” Kreitzer said.

“[Smith]’s positivity and openness about her condition is a welcome sight. Marfan’s has a strong, well-spoken ambassador in her.”

Smith is a native of Scarborough and is expecting to earn her associate’s degree in business administration with an entrepreneurship focus this May from Southern Maine Community College in South Portland. Smith plans to pursue a career in clothing design, hoping to one day open up her very own clothing store.

To find out more about Marfan syndrome, recent research and related disorders, visit NMF’s website at Marfan.org.

To learn about more recent happenings and upcoming events within the School of Biology and Ecology, visit sbe.umaine.edu.