Loeys-Dietz syndrome (LDS) affects people of all ages, including children. Their diagnosis can be a big adjustment for the whole family. However, understanding your child’s diagnosis, care, and resources can help them to live a long and meaningful life.
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.
