Dr. Tiscar Cavalle-Garrido has long been a leader and champion for Loeys-Dietz syndrome (LDS) diagnosis, multidisciplinary care, and research. She occupies six academic and clinical appointments, including an appointment as
After officially being diagnosed with Loeys-Dietz syndrome (SMAD-3 variation) in October 2021 and having to postpone my pursuit in higher education, I knew my life would be filled with various
People with Loeys-Dietz syndrome may experience pain throughout the body. Pain can be chronic (lasting more than three or four months) and negatively impact quality of life. To help decrease
Justin’s eulogy, delivered by his father Salvatore (Sal) Fratino: Justin was born on March 27, 1982 at 9:32 AM and 4 hours later, he had the 1st of many more
My name is Kristýna, I am 28 years old and am a graduate clerk. I currently work in a supermarket and have been living in Prague for 10 years, but
My name is Hélène, I am 45 years old, and my husband and I have 3 children. After over 20 years of doctors telling me not to worry about having
6 min. read How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS? As the school year approaches, LDS families
Izzy is a genetic counselling student at the Icahn School of Medicine at Mount Sinai with a special interest in genetic connective tissue disorders. She doesn’t have Loeys-Dietz syndrome, but
Katya is an advocate and influencer using social media to share her experiences, insights, and resources for travel and daily life with chronic illness. Katya covers topics such as maintaining
9 min. read Do you love to travel? Do you want to travel more? Are you travelling with a chronic illness or with someone that has one? If you answered
Our Heritable Thoracic Aortic Disorder (HTAD) stories are powerful, personal, and offer a real look into what it’s like to live with or care for someone with conditions such as Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, and related diagnoses.
These stories are shared by individuals living with HTADs, their loved ones, medical professionals, and members of the broader community. They explore the medical, emotional, and social realities of these conditions—highlighting experiences like seeking a diagnosis, managing treatment, finding support, and navigating daily life with resilience and hope.
In addition to personal stories, this section also includes helpful patient support information designed to connect, inform, and empower those affected by HTADs.
Thank you to everyone who has shared their journey. If you’d like to contribute your story or experience, please contact us—we’d love to hear from you.
