The National Marfan Foundation is gearing up for its 28th Annual conference, held at Northwestern Memorial Hospital in Chicago, August 2-5. Hosted by Northwestern Medicine® and the Ann and Robert H. Lurie Children’s Hospital of Chicago, the four-day conference has something for everyone with Marfan syndrome (MFS) and related disorders, including access to many of the top MFS experts in the world. Among the notable MFS experts will be Northwestern’s own Marla A. Mendelson, MD, cardiologist, and cardiac surgeon, S. Chris Malaisrie, MD.
“In addition to the medical presentations and small-group workshops, conference attendees have the opportunity to make an appointment for a free evaluation with some of the top Marfan experts,” said Marla Mendelson, MD, medical director of the Program for Women’s Cardiovascular Health at Northwestern Memorial’s Bluhm Cardiovascular Institute. “It’s extremely important that people with Marfan syndrome get an accurate diagnosis and appropriate treatment advice to prevent serious and even life-threatening consequences.”
MFS affects men and women, young and old, and people of all races and ethnicities. MFS is most often genetic, although one in four instances occurs in people with no family history. It’s an abnormality in the body’s connective tissue. Connective tissue helps support all parts of the body and helps regulate growth and development. Therefore, MFS patients can experience problems in many areas, including the eyes, heart, bones, lungs and spinal cord. One of the most serious complications of MFS involves the heart’s main blood vessel, the aorta, which is a major source for pumping blood throughout the body. When MFS is present, the aorta can stretch and grow weak, leading to an aortic aneurysm. An aneurysm may tear, leak blood, or even worse, burst. A very serious condition called aortic dissection can lead to severe heart problems or even death as well.
“This comprehensive conference offers a CME course for physicians and healthcare professionals on current diagnostic and therapeutic challenges for patients with Marfan syndrome and related disorders,” said Chris Malaisrie, MD, cardiac surgeon at Northwestern’s Bluhm Cardiovascular Institute. Malaisrie adds that early intervention is imperative, and that the cardiovascular abnormalities are by far the most serious, requiring major medical and potentially surgical intervention.
“Children and teens with Marfan syndrome can encounter multiple physical and psychosocial challenges related to their disorder,” said Luciana Young, MD, cardiologist and director of echocardiography at Ann and Robert H. Lurie Children’s Hospital of Chicago. “Due to the risk for aortic dissection, many young MFS patients require restricted physical activities. And, psychosocially speaking, children and teens may struggle with issues of self-esteem related to their physical appearance.”
Drs. Mendelson, Malaisrie and Young reiterate that this conference is designed for people with MFS and related disorders to come together and learn from experts. There are workshops for children, teens and young adults to give those with MFS and related disorders a platform to discuss their issues and bond with one another. Nearly 7,500 individuals with MFS, families, spouses, siblings and medical professionals have attended this event since it kicked off in 1982.