Loeys-Dietz syndrome: one family’s story

Learning to live with this genetic connective tissue disorder

Rosemary Batanjski 1[1]

Dr. Rosemary Batanjski knows firsthand about Loeys-Dietz syndrome (LDS), a genetic disorder that affects the connective tissue in the body and often involves the aorta. She was diagnosed with the syndrome, along with many family members, including her own two children, her sister and two children, as well as her father (who died at age 43), aunt and cousin Nik (who passed away at age 31).

Dr. Batanjski’s grandmother also passed away in her late 40s, although a Loeys-Dietz diagnosis did not exist at the time. In fact, the syndrome was identified only 10 years ago. Until the discovery, many Loeys-Dietz patients were thought to have Marfan syndrome, a similar connective tissue disorder. Continue reading