National Marfan Foundation Offers New Booklet for Teens with Marfan Syndrome

PORT WASHINGTON, NY, December 2006 -- Relationships and dating...Participating in sports...Maintaining a positive self-image...These are all important concerns for any teenager, but for adolescents with Marfan syndrome, a potentially life-threatening genetic disorder of connective tissue, these problems associated with the teen years are often magnified. To help teenagers with Marfan syndrome address normal teen-age concerns, the National Marfan Foundation now offers a free booklet, Marfan Syndrome: A Guide for Teens.

People with Marfan syndrome often have disproportionately long arms and legs, indented or protruding chest bones, curves in their spine, and eye problems. Their aorta, the large blood vessel near the heart, is prone to enlarge, which can lead to a tear or rupture. A ruptured aorta (think of a balloon bursting) can lead to sudden death.

As a result of the disorder, teens with Marfan syndrome often look different than their peers; they may need thick glasses and be limited with their physical activity due to the stress it places on their joints; they need to refrain from competitive sports because the effect on their fragile aorta. The teen-age years are difficult enough, but with a connective tissue disorder, the problems are magnified.

"When you find out you have Marfan syndrome, it's very easy to feel sorry for yourself and be scared for the future. I suggest taking the disorder head on," wrote Aaron Hartman, a teen from Vermont, who was one of the contributors.

The booklet addresses basic concerns about Marfan syndrome, such as diagnosis, treatment, medication and surgery. It also focuses on relationships with doctors, school issues, concerns with appearance and preparing for your future.

An advisory committee of professionals and teens with Marfan syndrome developed the booklet in conjunction with the NMF. More than two dozen teens provided input.

"This booklet is a great tool for teens with Marfan syndrome and their parents," said Karen Wolk, Director of Support and Volunteer Services. "It includes advice for teens from their peers who bravely address real issues of concern to adolescents and a variety of solutions for different family situations."

The booklet, which was developed with a grant from the American Legion Child Welfare Foundation, is available through the NMF Marketplace.