New Brochure Addresses Obstetric Issues Related to the Marfan Syndrome

FOR IMMEDIATE RELEASE
May 10, 2004
Contact: Eileen Masciale
631-665-2163
publicity@marfan.org

New Brochure Addresses Obstetric Issues Related to the Marfan Syndrome

-- Concerns for Both Mother and Baby are Featured --

PORT WASHINGTON, NY – The National Marfan Foundation announces the availability of a new medical education brochure for obstetricians/gynecologists titled, Marfan Syndrome: Obstetric Issues. The 12 –page brochure was developed for obstetricians who are caring for women with the Marfan syndrome who want to become pregnant. The brochure focuses on:

• Examinations and evaluations recommended for women with the Marfan syndrome prior to becoming pregnant.

• Ongoing care during the pregnancy, including monitoring of the aorta and pharmaceutical needs.

• Special considerations regarding labor, childbirth and the post-partum period.

• Issues regarding the newborn.

The brochure was developed by Judith Pratt Rossiter, M.D., Director of the Perinatal Center, St. Joseph Medical Center, Towson, MD, in conjunction with the NMF’s Professional Advisory Board.

For a free copy of Marfan Syndrome: Obstetric Issues – and other diagnosis and treatment information on the Marfan syndrome -- contact the NMF at 800-8-MARFAN or staff@marfan.org. Health care providers are also encouraged to visit the NMF’s web site at www.marfan.org, which has a track specific for medical professionals.

The Marfan Syndrome

The Marfan syndrome is a genetic disorder of the connective tissue that can affect much of the body, notably the skeleton, eyes, heart and blood vessels. In about 75 percent of cases, the disorder is inherited from an affected parent. One-quarter of the time it occurs due to a spontaneous mutation. The Marfan syndrome and related connective tissue disorders affect at least 200,000 people in the U.S. A person with the Marfan syndrome -- or with some of the related disorders -- may be at severe risk without proper diagnosis and treatment because of unsuspected aortic enlargement that predisposes to aortic tear and rupture.

Most people with the Marfan syndrome who are diagnosed and receive appropriate management can now expect to live a normal life span. However, as the untimely death of Tony Award-winning Rent playwright Jonathan Larson shows, lack of diagnosis can be fatal. Larson died of an aortic dissection as a result of the Marfan syndrome, which had not been previously diagnosed despite the fact that he displayed many of the outward signs of the disorder.

The National Marfan Foundation

The National Marfan Foundation is a not-for-profit voluntary health organization founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to support