Aortic Dissection awareness Week

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DachsieMom

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So apparently sept 19-26 was aortic dissection awareness week. I missed it. Google the John Ritter foundation - maybe I’ll catch it next year.
 
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Yes, another actor, Alan Thicke, died of the same. I was aware of the John Ritter foundation - I contacted them when I was first learning of my situation- they were extremely helpful and solidified my choice of surgeon. They are also running a genetics study.
 
Thanks for the heads up, I found this on John Ritter, I never realised what he died from until now.
https://www.healthline.com/health-news/john-ritters-widow-raises-awareness-about-aortic-disease
I currently know of a woman with Loeys Dietz syndrome who has a very recently discovered aneurym with a 30-40% chance of dissection and is also pregnant and not due for another 4 months, so hopefully it hangs in there until bubba has arrived.

I think calling it “Aortic Disease” is misleading. An aneurysm is a condition or state of the aorta. A dissection is an event that can be the end result of an undiagnosed aneurysm. However, there are a number of diseases or conditions that can lead to an aneurysm. Marfans, BAV, blockage in the from high cholesterol leading to an abdominal aneurysm.

Without getting a periodic CT or MRI, adding exponentially to the cost of healthcare, I’m not sure how they propose making sure nobody has to go through this again.

In the US, this means big insurance cost increases. In country’s with national healthcare, this would mean tax increases or even longer waits for a limited resource (MRI machine) for a non-emergency situation.
 
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