One Test
Jesse and his wife, Ashleigh, live in British Columbia with their daughter, Sophia. Jesse’s family has experienced many losses due to aortic dissection and Loeys-Dietz syndrome. Through Loeys-Dietz awareness, Jesse and Sophie, who both share the SMAD3 gene mutation, will have appropriate monitoring and treatment for the condition.
After my father passed away from a dissection, two years after his younger brother died from the same, I had genetic testing done and was diagnosed with Loeys-Dietz Syndrome. Learning about this genetic predisposition to dissections was very eye-opening and shed a lot of light on the many lives lost in our family. My wife and I have also just learned that our 13-month-old daughter Sophia also has Loeys-Dietz Syndrome. This was very difficult news to receive, especially knowing the physical and emotional pain that this gene has caused.
Most recently, we were heartbroken over the loss of my father's aunt, Bernadette, who passed away last month after suffering from a dissection nearly two months prior. She was a kind and caring soul, who will be missed dearly by her loving family and anyone who was lucky enough to have known her. It's because of her, my father (Tim), my uncle Craig and all those impacted by this genetic condition, that I started The Skinny Genes Foundation. It's my goal to work with amazing organizations like the Marfan/Loeys-Dietz Foundation, to help educate and raise awareness for these conditions.
I am lucky enough to have amazing doctors and have had more MRIs and CT scans than I can count, never seeing a bill or having to advocate for the level of care I needed. What genuinely keeps me up at night is knowing how close I was to not knowing about my condition, and potentially leaving my wife and daughter with the heartache of loss that we know first-hand. One genetic test, which was only done as a result of my father's death, was all that was needed to explain the countless lives lost. Tragedy should not be the only prerequisite to having this potentially lifesaving testing done.
That's the story I want to tell. Anyone reading that story can see that Loeys-Dietz awareness is not something to take lightly and can have devastating consequences. I believe that my story is the perfect example of the power of awareness and education. Without those two things, a medical breakthrough, no matter how extraordinary, is rendered useless. My life, my daughter's, and future generations of my family will be followed by cardiologists, ensuring that aortic dissections do not suddenly and unknowingly take us away from our loved ones.
- Jesse Teindl