Rarecast

When Muriel Finkel’s uncle became unable to live alone because of amyloidosis, a rare condition in which misfolded proteins accumulate in organs throughout the body, he moved in with Finkel and her husband. As a caregiver, she struggled to understand his condition and medical needs. After his death in 2003, she co-founded Amyloidosis Support Groups to provide peer group support to patients, caregivers, families, and friends of those touched by the life-threatening disease. We spoke to Finkel about her own experience as a caregiver, what led her to establish the organization, and what she’d like others to understand about the challenges caregivers face.