Columns

In my work as a patient advocate for the New Zealand Amyloidosis Patients Association, I occasionally need to assemble content for the awareness projects I’m involved in. Whether it’s a speaking engagement or a mind map diagram for a presentation, I usually highlight setbacks and milestones my husband,…

After almost three years of not seeing my family, I’m finally back in Malaysia to spend some quality time with my father, siblings, and children. More important, I can receive closure after my mother’s passing last May. I’m challenged by the fact that she wasn’t here to hug me upon…

For the first time since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, his care team brought up the subject of palliative care last week. Was it unexpected? Yes. Were we prepared for this new step? No. Despite the many challenges we have faced, both individually…

As a caregiver to a spouse with hereditary ATTR amyloidosis, I’ve become familiar with our local hospital. The countless appointments and stays that Aubrey, my husband, has endured since diagnosis in 2013 have allowed me the opportunity to roam the building and acquaint myself with the layout of…

Having a chronic illness is never easy, both for the sufferers and their caregivers. My name is Jaime Christmas, and my husband, Aubrey, started feeling unwell in late 2012. It all started with numbness in his fingertips, but it wasn’t until he lost his taste for food that he…

As I write this, my husband is in the hospital due to complications of hereditary ATTR amyloidosis. Aubrey, 58, was diagnosed in 2013, and this nine-year journey has been transformative. We both have learned to adapt to an ever-changing health situation and roll with the times. In a past…

Every so often, my husband, Aubrey, and I go through this exercise where we evaluate our circumstances in life and decide if we should shake things up a bit. Since the pandemic‘s start, we both have been challenged, not only by its hampering our movement and autonomy, but also…

The day arrived when COVID-19 stepped into our home via our youngest daughter. She found out that a university classmate who’d sat next to her had been infected with omicron. Fortunately, she is in a self-contained area of our home, so as long my husband and I don’t come into…

In 2018, Gov. Bill Haslam made Tennessee the first U.S. state to declare March as Amyloidosis Awareness Month. Since then, those diagnosed with the disease worldwide are acknowledged, recognized, and appreciated this month for the untold challenges they face with this condition. Setting aside a particular month to…

Every week I write my column using my personal experience as a caregiver to a spouse diagnosed with hereditary ATTR amyloidosis. Writing demonstrates my competence to reflect on my words and actions. I can celebrate my strength and tenacity in carrying my responsibilities as a mother to four…