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
