Amiel’s Story

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.

LDS Stories

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.

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