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Health System Barriers for Amyloidosis Patients

key information

source: Institute for Patient Access

year: 2020

summary/abstract:

Rare diseases present unique challenges, often beginning with a diagnosis. Symptoms may puzzle patients and even leave health care providers uncertain. Diagnostic tests and tools may be difficult to access, buried behind health plan red tape. For patients who do finally find answers, treatment may be out of reach. These challenges ring true for a rare disease called amyloidosis, caused by a build-up of abnormal protein in different bodily organs. 
 
Depending upon how the disease manifests, patients can experience debilitating symptoms like dizziness and nerve tingling, nausea and vomiting, extreme pain, undetectable blood pressure, kidney damage, swollen legs or shortness of breath. As symptoms worsen, patients become less mobile and more dependent on the care of loved ones. Progressive and multifaceted, amyloidosis can levy a tremendous burden on patients and their families.
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