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 new challenges.
During my diagnosis, I remember this overwhelming sense of anxiety, stress, and fear, and how I wish I had someone to talk to who could relate to my personal LDS experience.
Thus, when I was introduced to the Foundation in May 2022, I pitched the idea of a new support initiative, for Canadians with LDS.
Currently, I volunteer with the Foundation to ensure that LDS patients have ample resources, knowledge, and overall support in their LDS journeys – ranging from initial diagnosis to everyday struggles.
For more Loeys-Dietz syndrome stories like Amiel’s story, click here.
Find Help with LDS
To find peer support and information on LDS resources, contact us.