Hello everyone! About once a year, I try to post the following - TopicsExpress

Hello everyone! About once a year, I try to post the following information for all newcomers to this site and to aortic dissection. And, of course, I also post it for those of you who arent new to the world of ripping aortas but still havent been tested. ;) PLEASE. Go. See. A. Geneticist. ... My name is Melissa. I am 34 years old, and I am a Patient Advocate in North Carolina. I teach healthcare staff how to engage patients, and my favorite thing in the world is teaching PATIENTS how to be their own best advocate, because yes, Ive been there. Im an aortic dissection survivor too. I was 28 years old and 35 weeks pregnant when my aorta dissected from just above the aortic root all the way down the entire descending aorta. I had a c-section that morning to save my son, open heart that night to save me and two more open hearts the same year. I now have an entirely artificial aorta. After the dissection, I walked around for months wondering why on Earth this horrible thing had happened to me. And then a very wise rheumatologist sent me for genetic testing, and I got my answer. With a simple blood test, the geneticist told me that I have a rare connective tissue disorder called Loeys Dietz Syndrome, and having my diagnosis literally saved my life. Docs knew that most Loeys Dietz patients should be on Losartan to prevent further aneurysms and that LDS patients should be operated on at smaller aortic sizes. So they treated me accordingly. And I made it through! Your diagnosis matters! Maybe you dont have Loeys Dietz Syndrome, like me. Maybe its another connective tissue disorder (CTD): Marfan Syndrome, Ehlers Danlos Type IV, there are lots of different ones, and lots of them are characterized by aortic dissection. Maybe you dont have a CTD at all. Maybe your dissection just happened. But what if it didnt? You need to know! Your doctor may not even realize that you need to have genetic testing done. ... But thats okay! ASK FOR TESTING ANY WAY! Be your own advocate!

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