Ashley K Shaver

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OBJECTIVE To characterize the medical history, disease progression, and treatment of current-era patients with the rare diseases Fontan-associated protein-losing enteropathy (PLE) and plastic bronchitis. STUDY DESIGN A novel survey that queried demographics, medical details, and treatment information was piloted and placed online via a Facebook portal,(More)
For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic(More)
Neonatal lupus erythematosus (NLE) is a rare autoimmune disorder associated with transplacental migration of maternal autoantibodies against SS-A (Ro) or SS-B (La) antigens that results in cardiac, hepatic, cutaneous, and hematologic manifestations. Although NLE-associated neutropenia is considered transient and benign, neutropenia caused by severe(More)
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