Beyond This

loeysdietz

  • From Plan A to Plan Z: Living beyond Loeys-Dietz

    I am honored to have had the opportunity to speak at TEDxHope College in April 2021. I am excited to share this recording of my TED Talk on life with Loeys-Dietz Syndrome. For more information on Loeys-Dietz Syndrome, please visit… Continue reading

    From Plan A to Plan Z: Living beyond Loeys-Dietz

  • Holes are not Vacuums

    This fall was the 10th anniversary of my heart murmur. I should clarify. This fall was the 10th anniversary of a doctor finally noticing a heart murmur. It was actually the 22nd anniversary of the heart murmur as a whole. … Continue reading

  • A Whole 30 Experience

    Every New Year, conversations are filed with New Year’s resolutions. Generally people see the new year as a perfect opportunity to start a habit that will actually be good for their body or mind. It is during this time of… Continue reading

  • Managing Health in College: Making the Plan

    Moving to college, or away from home, is a big change. There is a lot that goes into making that transition comfortable and successful. There are millions of posts on the internet about learning to manage time, learning to navigate… Continue reading

  • Loeys-Dietz Awareness Month 2020

    June is Loeys-Dietz Awareness Month!  We kicked off the month by participating in The Marfan Foundation’s Virtual Walk for Victory. This fundraising event supports patients, families and caregivers through essential research and resources on genetic aortic conditions such as Marfan… Continue reading

  • Life Gave Us Lemons

    March of 2020 seemed to consist only of news about COVID-19. This is scary and upsetting, and has ripped apart many of our plans. As a college student, I had to leave my campus and begin online classes. As someone… Continue reading

  • The Fix

    After the call, I went into full survival mode. I calmly closed my drawer, texted my manager to find someone to cover my shift for the next couple days, and left for the emergency room. A family friend was able to meet… Continue reading

  • The Pinch

    The summer between high school and college was supposed to be a celebration of graduation and an exciting preparation for college. I had three jobs, international travel and lots of other big plans in the works. While it turned out differently than I had planned, it was a huge… Continue reading