I've desperately searched for answers specific to the condition to ease my mind and I continue to come up empty. I thought this would be the best way to keep friends and family in the loop as I post new information as it is given to me. And maybe someday this blog can give someone else the answers they are looking for. I've basically lost my entire family to this silent killer. The specific gene was not even discovered until 2007. By that time 5 of my family members had already lost their lives. It happens so fast and there is little time to react.
Since this is all new to me, the medical terminology can be confusing. From what I understand, based on the current data, TAAD is caused by a genetic mutation typically passed through a male. The specific mutation affecting my family is called ACTA2 and when someone has it, there is a 50/50 chance of passing it on to their offspring. In a nutshell, this mutation causes a genetic weakness in the aorta. When the condition is unknown or not followed closely, a dissection can occur. At that point, the survival rate spirals drastically. Unfortunately I've had to witness this nightmare 4 times. I don't have it in me to watch again. Especially when I'm the one who's "next".
I dedicate this blog to my grandmother Charlotte, Uncle Todd, Aunt Amber and Pandy, my dad Terry, and my cousin Chris. I miss you all everyday and I am so blessed to still have my daddy.
"You never get over the loss of a loved one. You simply learn how to deal with it."
