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Did You Know February was Marfan Syndrome Month?

Clough Elementary students in Lauren St. Pierre's second grade class wear red in honor of Marfan Syndrome Awareness Month.



Everyone knows that February is a month to remember your valentine, check if the groundhog sees its shadow, and honor the Presidents of the United States of America; but did you know that February is also Marfan Syndrome Awareness Month? If you didn't, then you are not alone.

Marfan Syndrome is a rare genetic disorder that affects the body's connective tissue and can impact the heart, blood vessels, bones and eyes. People with Marfan Syndrome may have certain physical characteristics such as being unusually tall and have long limbs and flexible joints, but they can also have underlying issues with their heart or eyes, issues where health professionals say it is extremely important to receive an early diagnosis in order to receive proper treatment.

Hoping to shed some light on this genetic disorder, Mendon resident Sue Allen has been working with the New England Chapter of the Marfan Foundation as an educator to help people learn more about the syndrome. Allen knows a great deal about the disorder because her 8-year-old son, Cameron, has Marfan's.



Cameron was diagnosed with Marfan's in 2010 after they took him to an ophthalmologist because he would put books very close to his face in order to read them. "We very quickly went from thinking he was nearsighted to having to have the lenses removed from his eyes," she said. He now must wear three special pairs of glasses to replace the fact that he no longer has those lenses in his eyes; one for outdoors, one for indoors, and one for reading. Allen said that because Marfan's is degenerative, Cameron may also face other operations in his future including an aortic valve replacement because of his being dilated from Marfan's.

Although living with Marfan's means many restrictions for a young boy, Allen said that she, her husband Craig, and their six-year-old daughter Bella work closely with Cameron's team of doctors at Boston Children's and Mass Eye and Ear to make sure he can "still be a kid." "He can't play any game with a hard ball or anything with any physical contact whatsoever; it's too risky," she said.

Allen admits that keeping an 8-year-old, "very active" boy from running around like other kids his age is a challenge. "We have tried to introduce him to other things but he gets bored; he just wants to be out there running around on the playground. We have really had to change the way we look at recreation," she said.

Allen said as well as looking into some safe alternatives for Cameron to stay as active as he can, they are also hoping to take him to the Marfan Conference this summer in Baltimore. "We want him to meet other kids with Marfan's and see he is not the only kid going through this," she said.

Allen said that although the "unknown" is always in the back of her mind, they try to focus on the positive. "We as a family know that God created our kids and somehow there is a way to get through this. We work on being present in their lives; we are there to tackle the next problem," she said.

On February 28, Clough Elementary School, where Cameron is a second grade student, acknowledged Marfan Syndrome Awareness Month by holding a fundraiser for the Marfan Foundation. Students were asked to wear red, the color of Marfan Syndrome awareness, and to bring in a $1 or more donation to the cause. Students also learned about Marfan's with books in the library and talking about the syndrome during their monthly school-wide walk.

Allen said that she is happy that the Clough community was taking part in Marfan Syndrome Awareness Month. "Part of the reason we want people to understand about Marfan's is that it is a rare disease, and early diagnosis is so important. We need to spread the word about Marfan's" said Allen.

For more information about Marfan Syndrome, visit www.marfan.org.




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