Musings of a Marfan Mom

Changes in the World of Aortic Disease

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In case you haven’t heard, there’s more great news on the aortic dissection front! This news is two-fold.

First, the American Heart Association and American College of Cardiology have finally released their Guidelines for the Diagnosis and Management of Patients with Thoracic Aortic Disease. This covers Marfan syndrome and related disorders, like Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome.

Now, it’s important to get the word out about these new guidelines of course, so the National Marfan Foundation (NMF) convened the Thoracic Aortic Disease (or TAD) Coalition. Actress Amy Yasbeck, wife to the late actor John Ritter (who died of an aortic dissection in 2003), wanted to raise awareness of aortic disease. She found the NMF, they suggested creating a coalition and put all the groups together. We’re very grateful that Ms. Yasbeck was so open to including ALL the genetic factors of TAD, not just familial aortic aneurysm (FAA), which is the illness that caused Ritter’s death (he’d had no idea that he had it).

I think the most exciting aspect of the coalition is the new Ritter Rules. Named for John Ritter, they’ve been put together to help patients be better advocates for themselves in the event of an aortic dissection, and to help identify their risk factors for aortic dissection to try to prevent one from occurring. Overall, I think they’re very patient friendly. Each point (urgency, misdiagnosis, imaging, risk factor, etc.) is clearly outlined, followed by a 1-3 sentence explanation. My only quibble is that I think they could have used simpler vocabulary at times, because the average reading level in America is between 4th and 6th grade, but that’s nit picking.

I also recommend taking the time to read people’s personal stories. My friend Steve Marpman is featured, and his story is amazing. Also included is Allison Dunvegan Reed, whose mother I know.

Be on the lookout for a lot more press on the new guidelines and Ritter Rules over the next few months!

Ritter and Yasbeck, courtesy of www.etonline.com

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