“You can’t pour from an empty cup,” says Joy. “Take care of your mental health—see a therapist, join a support group, and get enough sleep. Caregivers often feel like they have to do everything, but you have to take care of yourself to keep taking care of others.”

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.

Many individuals with Loeys-Dietz syndrome (LDS) have gastrointestinal issues.

These Frequently Asked Questions (FAQ) are a compilation of questions we commonly receive through our support groups and Help Center. Each answer has been carefully reviewed and provided by our expert team, including our Chief Science Officer, Help and Resource Center Director, LDS Director, and Dr. Hal Dietz.

“I was at work, and I got the call from the nurse practitioner at the surgeon’s office to say, you know…we got the results, and…you do have Loeys-Dietz,” he recalled. George, at just 45 years old, had several diagnoses, catching the attention of his physician. During the appointment, George could tell providers were suspicious that larger medical issues were in play.