I forgot to post this video too! Oops! Did anyone else have this experience? This is a big reason I spread awareness. I wish EDS was apart of my basic med school curriculum, tbh. I wish I could connect with someone at AMA. Dreams. One day. ❤️‍🩹

2025/8/15 Edited to

... Read moreHypermobile Ehlers-Danlos Syndrome (hEDS) is a complex connective tissue disorder characterized by joint hypermobility, chronic pain, and a range of systemic symptoms that can sometimes be difficult for healthcare providers to fully understand or treat effectively. Many patients report challenges in obtaining a comprehensive diagnosis and coordinated care, which highlights the need for increased education about hEDS within medical training programs. Patients with hEDS often experience additional complications such as vascular compressions, autonomic nervous system dysfunction (dysautonomia), and gastrointestinal issues. For example, vascular compression syndromes like Nutcracker syndrome—a condition where the left kidney vein is compressed—can contribute to significant symptoms and require specialized evaluation. Dysautonomia can cause symptoms including rapid heart rate, dizziness, and bladder dysfunction, further complicating diagnosis and treatment approaches. Due to the multisystem involvement of hEDS, an interdisciplinary approach to care is recommended, encompassing specialties such as rheumatology, cardiology, gastroenterology, neurology, and physical therapy. Raising awareness among healthcare professionals and advocacy within medical societies like the American Medical Association (AMA) can improve diagnosis rates and patient outcomes. Patients often express a strong desire for their condition to be recognized and incorporated into basic medical curricula to enhance early diagnosis and management. Sharing experiences through patient communities and digital platforms fosters understanding and support for those living with hEDS. Ongoing research continues to explore the genetic basis and optimal treatment strategies, with the ultimate goal of providing better quality of life for individuals affected by this challenging syndrome.

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