Beyond This

Claire

  • 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

  • Songs for the Overwhelmed

    Hi! It has been a minute since I made my last post. I decided to focus on school work and health this semester and am planning to get back into blogging over break. That being said, we are all walking… Continue reading

  • Medical Information Folder

    If you are a college student who lives with a chronic illness, you know it is likely that you will need to seek help from a medical professional at some point during the school year. If you have not already… 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

  • Conversation With Kylie

    I met Kylie as a freshman in College, but it wasn’t until our sophomore year that I learned she also has a connective tissue disorder. She has Ehlers-Danlos Type 3 Hypermobility, a condition that affects the tissue in skin and… 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

  • What is an allergy really?

    Allergies are confusing. What are they? How do you manage them? How do you explain them to people? How do you figure out what is safe to eat? etc.  Growing up I was vaguely aware that I had allergies. It… Continue reading