6 min. read In the face of rare, and often misunderstood conditions such as Loeys-Dietz syndrome, the resilience of individuals and their families shines brightly. In this post, we share
Medical Disclaimer The information provided here is meant to empower individuals to make informed decisions – it does not, however, replace a reader’s relationship with their doctor. This article is
“We interrupt this regular conversation of “LDS: Doom and Gloom” to cover the topic of bags. School bags, knapsacks, tote bags, purses, briefcases, fanny packs, crossbody bags, coin purses, and
Written by: Amiel Buning *Tu tump* *Tu tump* *Tu tump* Listen closer and tell me what you hear Hand on your chest tell me what you feel If I gave
Written by: Amiel Buning “You Have it”. After months of waiting for an official diagnosis, my results were given to me through these three life-changing words. “You Have it”. “As
Individuals with rare diseases often find themselves navigating uncharted territory, as there may be limited knowledge about their condition. In such circumstances, peer support groups offer a lifeline, providing a community of individuals who share similar experiences and can offer valuable support.
By: Lauren Founder of Higgy Bears Hi! My name is Lauren, and I am the founder of Higgy Bears, a nonprofit organization based in the US. I make special
Caroline Bell has been living with idiopathic scoliosis since she was a teenager. Now an adult with a spinal fusion, she is starting to tell her scoliosis story. Today, she
Caregivers play an invaluable role in the lives of people with Loeys-Dietz syndrome (LDS). However, caregiving can be challenging. It is important to talk about navigating this journey and finding
As a parent of a child with Loeys-Dietz syndrome type 2 you never know what the next day is going to bring. From the time I was five months pregnant I
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.
