Connective Issues Winter 2018



MARFAN AND RELATED DISORDERS FAMILY CAMP Last year, 25 children and their families attended our first Marfan and related disorders family camp and gave it rave reviews. Now, family camp is here again! Registration is now open at FRIDAY, APRIL 20 – SUNDAY, APRIL 22, 2018 TWIN LAKES CAMP WINDER, GA Camp features fun activities for all ages: • Arts & Crafts • Camp Fires

The Marfan Foundation is now offering a new resource featuring physical activity guidelines for people who have Marfan syndrome and related disorders. The new fact sheet addresses what kinds of activities are generally low risk, which activities require some modera- tion, and what kind of exercise should be avoided. It also provides insights into what doctors worry about when people with Marfan syndrome participate in exercise and sports and explains the rationale for the limitations. The Foundation’s Professional Advi- sory Board, which consists of the leading doctors on Marfan syndrome and related disorders from throughout the U.S., provided input and oversight to the new fact sheet. “Exercise is important for everyone, but there are limitations for people with connective tissue disorders, such as Marfan syndrome,” said Alan C. Braverman, MD, Director of the Marfan Syndrome and Related Disorders Clinic at Wash- ington University in St. Louis School of Medicine/Barnes-Jewish Hospital and a member of the Foundation’s Professional Advisory Board and Board of Directors. “While the recommendations have not changed, the new resource helps people better understand the various types of exercise and clarifies what the potential dangers are with, for example, competi- tive and contact sports, so that people have the information they need to make decisions that are safe.” Regular exercise improves both physical and emotional well-being and can be incorporated safely into the routine of people with Marfan syndrome. Therefore, they are encouraged to adapt health measures that protect them from Marfan features that can worsen and from medical conditions that are simply part of the aging process. With an early diagnosis, treatment, and lifestyle adap-

• Music & Sing-a-longs • Outdoor Adventures

• Fishing • Boating • Carnival • Archery • And More!


Professionally-led discussions will be held for parents. And, a Marfan- knowledgeable nurse will be on-hand. “Of course one can make friends at any sort of camp. But, to make a friend who understands Marfan is something Bobby wouldn’t get any- where else, except perhaps at [the Foundation’s] conference.” – Jay Elliott, of St. Louis The cost to attend is $125 per adult and $95 per child. This includes accommodations, meals, and all activities. For more information, please contact Susan Leshen,

tations, many people with Marfan syn- drome can now expect to live a normal life span. The guidelines are intended for those with Marfan syndrome and related disorders; however, individuals may have unique disease-specific manifestations that require additional consideration and restrictions. For example, those with Loeys Dietz syndrome may have cervical instability, which impacts guidelines on certain exercise and physical activity. Please consult with your physician about your individual case. To download the new physical activities guidelines, visit physical-activities-guidelines. or 800-8-MARFAN, ext. 122.


Made with FlippingBook HTML5