Living with Loeys-Dietz Syndrome

Just got in with my wife after seeing the cardiologist at Southampton General.

My wife suffers from a rare condition called “Loeys-Dietz Syndrome” which is a genetic condition affecting the connective tissue in the body, especially the aorta.  It is similar to “Marfan’s Syndrome” and was only discovered recently.

We were basically told not to have children until my wife had an operation to replace her ascending aorta to prevent an aortic dissection.

We have discussed children and decided we both wanted them but not until after this operation, we even had names picked out before we were married!.

All stuff we suspected anyway, but it was still good to have it confirmed by the Cardiologist.

I know hospitals are usually running late and usually for good reason, but we got seen early today which surprised both of us (we hadn’t even had time to finish our drinks or get into our books)!.

Well, time for me to browse amazon for nice things I can’t afford until I find that elusive job which I know is out there somewhere! then to make a start on dinner!.

For anyone interested, I will put a couple of links below:

What is Loeys-Dietz Syndrome?




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