@amywanghiller: I had the honor of being featured on WFAA local news to advocate for earlier diagnosis of connective tissue disorders and their comorbidities, like CCI and AAI. When discussing joint hypermobility, it’s vital not to overlook the spine—especially the upper cervical region. Ligament failure in the occipital-C2 area is often dismissed, despite the serious risks after losing the ability to support our head and protect the spinal cord and brainstem. CCI (cranialcervical instability) and AAI (atlantoaxial instability) are more common than many physicians realize. I’ve often been told I’m an “outlier” or that these conditions are “too rare.” But early diagnosis is crucial to preventing further damage. One top neurosurgeon once told me not to be disappointed if I didn’t see much improvement due to the long delay in diagnosis. My response? “That’s okay, at least I can still play the violin.” Months after the recovery, my goal remains to help others adapt to playing string instruments despite weakness and to spread awareness among patients who are just as passionate about advocating for themselves and others. (🎙️@hiddendiagnosesimpact ) —- #EhlersDanlosSyndrome #Paralysis #Quadriplegia #PatientAdvocacy #DisabilityAdvocacy #Hypermobility #EDSAwareness

Amy Wang-Hiller

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Region: US

Sunday 11 August 2024 04:53:50 GMT