MarfanLife.net | News blog

Treatment of Aortic Disease in Patients With Marfan Syndrome — Milewicz et al. 111 (11): e150 — Circulation: Treatment of Aortic Disease in Patients With Marfan Syndrome
Dianna M. Milewicz, MD, PhD; Harry C. Dietz, MD; D. Craig Miller, MD

The link above is to the full text in journal Circulation

Greeley Tribune - News: “Janette Michaud can’t go through any more pain.

In a matter of 19 years, the Severance woman lost her husband and two daughters to Marfan Syndrome, a genetic disorder that affects the connective tissue.”

Pendle Young Musician in Colne, Essex (UK): “A memorial party for Jason Ward (25), known to many as Purple, has been organised by his family, and will be held at Atlantis, at the Hendly Hotel, on Friday, celebrating what would have been his birthday this Wednesday.
But the partygoers will not just be remembering Purple’s life ? they will also be learning about Marfan Syndrome, the condition which led to his tragic death.”

Newport News-Times: Family works to save son’s heart: “To the casual observer, Alex looks every bit like a normal n albeit very tall n confident young man. The concave depression in his chest is easily hidden by clothing. He said he gets self-conscious, however, iwhenever I go to a swimming pool, I walk around with my arms up. And I canit play sports, I’m always short of breath.”
…
“Alex’s other condition, bicuspid aortic heart disease, involves his aorta - the largest artery which carries oxygen-rich blood from the heart to the rest of the body. Alex’s condition involves an enlargement in the ascending aorta, the section of artery near the aortic root, which is under the most pressure and handles the greatest volume of blood.”

Clinical Trial Of Newest Technology To Treat Thoracic Aortic Aneurysms Begins: “Philadelphia, PA — A clinical trial is underway at the Hospital of the University of Pennsylvania (HUP) to study the safety and effectiveness of an endovascular medical device to treat life-threatening thoracic aortic aneurysms. Ronald Fairman, MD, Chief of Vascular Surgery at HUP, is leading the study at Penn and is one of 35 principal investigators in North America to participate in this landmark trial.”

Kurnitz memorial: “The family and friends of Julie Kurnitz, the singer and actress who died July 15 at the age of 61 of Marfan syndrome, will celebrate her life at a memorial service at 4 p.m. Sat. March 19 at Judson Memorial Church, 55 Washington Sq. S.”

The Bristol Press - News - 03/06/2005 - Debunking myths about Marfan Syndrome “… Often thought of as a tall person’s affliction, “the first of many misconceptions about the illness is that height is in no way a criteria for Marfan Syndrome,” Silverman said. “I’ve met many who are short.The ratio of upper torso to lower body is a criteria, but tallness doesn’t have any thing to do with it.”

“The syndrome is named for its discoverer, Antoine Marfan. It is an inherited disorder but the gene that is responsible for Marfan is complex, and produces a significant number of small mutations. …”