Caregiver Stories

BackgroundLittle is known about what happens when patients and caregivers are involved in an academic setting as co-teachers and how healthcare professionals…

BackgroundWe sought to assesses the impact of caring for children with ultra rare diseases (URDs) on family carers and to analyse the way these experiences differ…

Perseverance was ingrained in Nancy from an early age and has allowed her to fill the role of caretaker, single mother and nurse. “Nursing is a physical job,” she…

I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement.I am currently in a clinical trial and I’m happy to say that I’m doing well. I am…

Nancy Verel, a nurse at the Cleveland Clinic, shares her story about her family’s journey through her husband’s AL amyloidosis diagnosis and treatment. Robert David…

When Pat Jordan, 65, was officially diagnosed with hereditary ATTR (hATTR) amyloidosis in May 2016, her first thought was, “Well, now I know how I’m going to die.”…

Are you caring for an aging parent, spouse, partner, elderly relative, child with an illness or disability, or another person close to you?Caring for Yourself While…

As a family caregiver of a love one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising.  Caregivers in the…

Caring for someone with a rare disease can be an around-the-clock commitment, leaving caregivers with little time to attend to their own needs. Forty percent (40%)…

Valentine's Day 2013, we received a call from my husband's nephrologist. A week earlier we had no idea what a nephrologist was. And doctors don't typically call…