It's Topic Tuesday!
Today is Topic Tuesday at Aortic Hope.
June is Loeys-Dietz Syndrome Awareness Month so we wanted to take a moment to familiarize you with LDS.
As stated in the Loey's-Dietz Syndrome Foundation website, it states:
"Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. The disorder was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005."
Here is some characteristic information:
"Four main characteristics suggest the diagnosis of LDS. These features are not usually seen all together in other connective tissue disorders as major characteristics. These symptoms include:
Aneurysms (widening or dilation of arteries), which can be observed by imaging techniques. These are most often observed in the aortic root (base of the artery leading from the heart) but can be seen in other arteries throughout the body
Arterial tortuosity (twisting or spiraled arteries), most often occurring in the vessels of the neck and observed on imaging techniques
Hypertelorism (widely spaced eyes)
Bifid (split) or broad uvula (the little piece of flesh that hangs down in the back of the mouth)
It is important to note, however, that these findings are not observed in all patients and do not concretely lead to a diagnosis of LDS.
If you would like to learn more about LDS, please check out their website.
If you have LDS and would like to share your story, please email us at firstname.lastname@example.org