MarfanLife.net | News blog

Pectus Excavatum: Magnetic Mini-Mover Procedure (3MP)
For more than 50 years, pectus excavatum has been corrected by major surgical reconstruction through the use of either the Nuss or Ravitch procedures. Both of these procedures require big operations and hospitalization for pain management.

Wired News: Old Drug Could Fix Hearts
Jonathan Larson, the Tony Award-winning playwright of the Broadway musical Rent, died of a torn aorta onng day. He was 35 years old.

Scientists believe that a common hypertension drug called losartan could have saved him.

HHMI News: Early Surgery Recommended for Those with Life-Threatening Vascular Disorder
According to a new study of patients with a life-threatening condition known as Loeys-Dietz syndrome (LDS), children with the inherited vascular disorder should be considered early candidates for surgery to prevent lethal rupture of the aorta, the heart’s main artery.

Losartan Q & A from the National Marfan Foundation
Hope and optimism resonated throughout the NMF’s Annual Conference, and the buzz increased after Dr. Hal Dietz presented his recently published data about the impact of losartan, an FDA-approved medication, on mice with Marfan syndrome.

From a reader:

“Here are the meds for my 6 year old marfan child and yes one is a “Flintstone”. She takes these everyday. She is pretty lucky as I know there are other marfan patients who take much more in a day. She has been taking meds since she was 3 months old.

“On a recent family trip I had a 500 ml bottle I was measuring doses from and was asked why I traveled with such a big jug of meds. Hmmm…I think the picture explains it. She chews through a bottle in 13.8 days. We get giant boxes of meds through the mail. The mail man must have a hernia by now.”

[I posted this, but then was told that the picture didn’t show up. I’m just bonkers in the head! Less than one hour to go and I’ll crash! -Jeanette, 8:21 a.m. EDT]

Who better to write about how to take care of one’s body than someone who has lived with health problems all one’s life? Roanne Weisman, who has Marfan syndrome, has written four books — one large and three smaller — about “choosing the best from alternative & conventional medicine.â€

This is a pair of pictures taken by the surgical team at Johns Hopkins Hospital during my Valve-sparing aortic graft surgery in 1999. The top photo is a view looking down through the Dacron graft at the Aortic valve. The bottom photo shows the graft in place prior to my chest being closed back up.

Posted by Bryan Jones

Editorial comment — Bachet 28 (2): 283 — European Journal of Cardio-Thoracic Surgery: “The article concerning acute type A dissection in pregnant Marfan patients published in the present issue of the EJCTS reflects, through the report of four cases observed over a period of 12 years, the yet often unresolved difficulties entailed by this accident and raises important questions related to its obstetrical and surgical management.”
This is only part of an editorial (you have to pay $25 for the full thing unless you have a paid subscription), but you can get a good idea of what he’s saying if you read the bit that’s available for free. Very good.

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

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.”