My career taught me that I had to advocate for students and families, so it was a natural transition to do what I could do to become a patient advocate and to advocate for those of us with OT Ruth Sitkoff Hochheiser Orthostatic Tremor
It's acceptable for a doctor to say, 'I don't know,' but that should be followed up by at least a minimal effort to change that. Selena Bluntzer Hyperkalemic Periodic Paralysis SCN4A Mutation
I knew I needed to step up in my role as an advocate for Joy's sake. Robert Glenn on behalf of his daughter, Joy Double Cortex Syndrome, Lissencephaly
Even though we were informed there was no known treatment or cure and that very few medical professionals were even aware of APBD's existence, we felt a degree of relief and even elation that, at last, we knew what we were dealing with. Sarah Williams Adult Polyglucosan Body Disease
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#OrthostaticTremor #HyperkalemicPeriodicParalysis #DoubleCortexSyndrome, #lissencephaly #APBD
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