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When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the emotional trauma experienced by children who watch their parents slowly deteriorate in front of them.
As a caregiver to my late husband, Aubrey, I witnessed not only the progression of the disease but also the quiet psychological impact it had on our children. hATTR amyloidosis brought fear into our home long before death ever arrived. The children were constantly aware that their father’s condition was worsening, and with that came the terrifying awareness that our time with him might be short.