Alli was diagnosed with Loey's Dietz in August 2018. When I told her that I wanted to run a 5k in order to raise money for research for her syndrome, of course she wanted to join me! We are running the Monster Dash 5K at Unity Villiage on October 27, 2018
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. Since then, other groups around the world have described additional genetic causes of Loeys-Dietz syndrome.
Individuals with LDS exhibit a variety of medical features in the cardiovascular, musculoskeletal, skin and gastrointestinal systems. Information about the natural history and management of individuals with LDS continues to evolve.