Loeys-Dietz Syndrome Awareness Month 2023
Join our month-long campaign to raise awareness for LDS and embrace uniqueness in the LDS community.
How can you get involved?
Each LDS Story is Unique
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.
Steve: Sitting that day in the doctor's office, and getting the information, the look on one child's face of I don't have it, to the look on the other child's face of I have it, is just etched into my brain. The suddenness, the change, the shock, the unknown of what is going to happen. Cynthia: Throughout my pregnancy and the early years with my children, I had no idea that we had any sort of illness to be dealing with. Nobody is cut out to have a chronic illness or rare, life-threatening disorder. We grow into it. The more we do these types of things [share and raise awareness] and work together, the easier the journey's going to be.
I contacted the Foundation on multiple occasions, for myself and for my family, and witnessed firsthand the team’s passion and willingness to support the community. I had the pleasure of working with the Foundation and currently volunteer by helping curate their directory of resources relevant to Loeys-Dietz syndrome.