By: April Dawn Shinske, Chief Communications & Marketing Officer  

Loeys-Dietz Syndrome (LDS) was formally identified 20 years ago as a distinct genetic aortic and vascular condition related to Marfan syndrome. LDS affects the body’s connective tissue and was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005. 

Individuals with LDS exhibit a variety of medical features in the cardiovascular, musculoskeletal, skin, and gastrointestinal systems—some of which can be life-altering or even fatal, particularly when the condition goes undetected for years. 

This year, during LDS Awareness Month in March, the Loeys-Dietz Syndrome Foundation, a division of the Marfan Foundation, is shining a light on this rare condition. Through first-person accounts, our “A Day in the Life” social media campaign from community members, government proclamations from around the nation, and science-based resources, the Foundation is working to ensure more people will #KnowConnectThrive. Early diagnosis can mean game-changing medical management that vastly improves quality of life and longevity.  

A part of LDS Awareness Month, George (Jorge) Carillo, who recently learned he had LDS that required aortic surgery, chose to share his story about being both a healthcare provider and now a patient/community advocate who is finding new ways to engage. 

“Especially when you’re in the healthcare field, you kind of have a different perspective, and I can’t just sit back…that’s why I decided to get involved [with Foundation events],” said Carillo. “Let’s share how we can help others in navigating this [LDS management] process.”   

Anyone who wants to share their own LDS-related story or learn more about LDS can visit our awareness month page which includes numerous resources, first-person experiences, and ways to connect with community.  

The Foundation is also offering a new resource beginning this month: Living with Loeys-Dietz Syndrome: Answers to Your Top Questions —a compilation of questions commonly received through support groups and its Help & Resource Center. The questions cover a wide range of topics and are aimed at providing clear, reliable information to those affected by the condition. Each answer has been carefully reviewed and provided by an expert team, including Foundation Chief Science Officer Dr. Josephine Grima, Help and Resource Center Director Stephanie Amdur-Clark, LDS Division Director Stacey Watson, and Dr. Dietz. 

Watson, who herself lives with LDS, emphasized the importance of awareness months in bringing rare conditions to the fore for both medical professionals and laypeople. “For me, LDS Awareness Month is a platform to come together and make our voices collectively heard. Just one person speaking in a crowd can be a quiet force —you might not be noticed. But when so many of us come together in a specific period of time, we amplify our message in bold new ways,” said Watson.  

In addition to the many awareness month activities, the Foundation invites the LDS community of people directly impacted by the condition and their loved ones to our attend our 40th Conference this July in Atlanta and commemorate this special 20th year of life-changing awareness.