Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
2020 is almost at an end. In a few weeks, we will celebrate the holiday season, and before we know it, 2021 will be upon us. The past year was mostly filled with bad news and unexpected events, and the turmoil caused by COVID-19 has impacted many people around the…
“Surprise!” I watched familiar faces filter into the room where I stood stunned, not expecting the birthday event that was unfolding before me. I turn 50 tomorrow, and some close friends went to the trouble of organizing a celebration for me. I was thankful for the moment, and I felt…
I feel the coolness of the glass against my forehead. The shower is pelting warmth against my skin, but the water doesn’t feel very soothing today. I am tense as I block out thoughts of banging my head against the glass shower door. I know this sounds absurd, but today…
“I love you. If anything happens to me, you know where I keep the account details.” My husband uttered these parting words as I dropped him off for admittance into the hospital in April. His severe fluid retention had caused his feet and abdomen to balloon up while his…
My husband lives under the banner of his disease. This may sound hard-hitting, but it is the fact of the matter. The sooner carers appreciate that hereditary amyloidosis may transform their loved one into someone else, the better they will adapt to their altered relationship with each other. I say…
My laptop reads 3:37 a.m. I made the mistake of checking my work inbox when I should be asleep. There are times I become overzealous in my correspondence. I want to provide a solution for the people who contact me right then and there. Leading a patient association has its…
I turn 50 this November, and one of the key things I have learned is that we as human beings totally underrate our ability to overcome tough situations. I have yet to figure out why we keep falling for the belief that life is all about success. (Check back when…
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