Blog
Bags, Tags, and (Mis)Identifying the Green Flags
“We interrupt this regular conversation of “LDS: Doom and Gloom” to cover the topic of bags. School bags, knapsacks, tote bags, purses, briefcases, fanny packs, crossbody bags, coin purses, and shopping bags. What do they all have in common? While bags vary in shapes and sizes, it is the contents inside that reveal what you need to know about a person. The truth will shock you! Tune in at 10:00pm tonight for more on this
An Unhealthy Fixation on Cardiovascular Causation
Written by: Amiel Buning *Tu tump* *Tu tump* *Tu tump* Listen closer and tell me what you hear Hand on your chest tell me what you feel If I gave you a hint, would it be crystal clear? The sound of your heart beating signifies you’re alive But what if it became a fixation in your mind? Plotting against you, your long-awaited demise You see, with LDS, I don’t know if I trust mine… To
Unveiling the Mindful Solution: Managing Chronic Pain in Loeys-Dietz Syndrome
In the realm of healthcare, where progress seems boundless, addressing chronic pain remains a formidable challenge. While medical advancements have enabled the treatment of various ailments, there are conditions like chronic pain that continue to defy easy solutions. One such enigma is Loeys-Dietz Syndrome (LDS), a rare genetic connective tissue disorder that not only presents unique challenges but also unveils a significant gap in pain management strategies. This article delves into the world of chronic
Exploring Frontiers in Genetic Medicine
A Unique Fellowship Opportunity in Aortopathy and Heritable Connective Tissue Disorders The Children Hospital of Eastern Ontario (CHEO) in Ottawa, Ontario, is offering an exceptional Clinical and Research Fellowship in Aortopathy and Heritable Connective Tissue Disorders. This one-of-a-kind opportunity arises at the intersection of genomics and cardiovascular care, tapping into the transformative power of genomic technologies to enhance our understanding of rare diseases. The Loeys-Dietz Syndrome Foundation Canada is proud to co-fund this opportunity. The
Navigating Family Planning with Loeys-Dietz Syndrome: A Comprehensive Guide
Bringing a child into the world is a profound and joyous journey, filled with anticipation and excitement. However, for individuals and families affected by Loeys-Dietz syndrome (LDS), this journey may come with unique considerations and challenges. Understanding the Need Family planning is a deeply personal and nuanced process. For those with LDS, the considerations extend beyond the ordinary, requiring a careful balance of medical insight and personal choice. Loeys-Dietz Syndrome Foundation Canada’s guide is not
Trauma Response to A Life-Changing Diagnosis
Written by: Amiel Buning “You Have it”. After months of waiting for an official diagnosis, my results were given to me through these three life-changing words. “You Have it”. “As expected, based on the results of your genetic testing and CHEO blood sample, you are in fact positive for the SMAD-3 variant of LDS”. – My Genetic Counsellor “You Have it”. Even years after receiving my official test results, these three words still haunt me