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2/9/2016 Latest post:
Hello, Welcome to my site, this is my story. I am Allisen, a 36 year old mother of two beautiful teenage girls from Anoka, MN. I have recently been diagnosed with Loeys-Dietz syndrome (related to Marfan's Syndrome). It's a genetic condition that can cause all kinds of problems but most importantly it causes aortic aneurysms and dissection of the aorta. We discovered the condition after my brother Brad's aorta dissected about 2 years ago. Check out his Caring Bridge if you are interested - just search for Bradley Waage (it's pretty incredible). They recommended genetic testing for me after Brad was diagnosed, and I also tested positive. This is most likely what caused the Kyphosis of the spine I had as a teenager which required major surgery, which some of you who have known me for a long time may remember. After meeting with the Marfan's specialists (they even talked to Dr Dietz about me) and a cardiac surgeon at the Mayo Clinic we have decided to move forward with surgery to prevent a dissection because I have an aortic aneurysm. My aortic root is dilated at 4.2 cm right now. The larger it gets the more likely it will dissect. Once a "normal" person's gets to about 5 cm it is considered to be dangerous, but due to the LDS I am more likely to have a dissection. Since I am less than a cm away from the "danger zone" currently, it's time to do something about it. I am on medication that will hopefully keep it under control until surgery. Other than this issue, I am young, healthy and strong - I plan to be here for my girls for a very long time! Check back here for updates on my surgery!