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
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
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
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
Our LDS stories are unique, valuable, and show what it is really like to live and work with Loeys-Dietz syndrome (LDS). By sharing these stories, we hope to help people in the LDS community feel connected, supported, and informed.
The stories are written by people with Loeys-Dietz syndrome as well as by their loved ones, medical professionals, and other community members. They share the medical, emotional, and social realities of their lives.
Their journeys are unique, but often have common themes: individuals fighting for a diagnosis, parents looking for answers for their sick children, and families navigating a new life with LDS – challenges, hope, and all.
Thank you to everyone who has shared their journey with us. We appreciate all that you do. If you are interested in submitting your story, please contact us.
To learn more about educational topics related to LDS, please read our Living with Loeys-Dietz Syndrome blog articles.
