Some time has passed since I lost my husband on May 22. For nine years, Aubrey suffered from hereditary ATTR amyloidosis. Despite the toll of this disease on his body, he stayed positive. My late husband held on to the hope that a treatment or cure would…
After nine years of being a caregiver to a husband afflicted with hATTR amyloidosis, I can no longer lay claim to having that role. My beloved husband of 27 years, Aubrey, passed away on May 22. Even as I write this, I realize that moving forward, I won’t…
I am sitting across from my husband, Aubrey, who’s on his last leg of life with us on earth. When I look at him, I see a man who has come to terms with the finality of his situation, but wishes that his failing body could keep up with…
On April 1, Malaysia’s borders reopened to international travelers following COVID-19-related closures, and I finally had the pleasure of visiting my family who lives there. I hadn’t seen them in more than three years, so after spending two weeks of quality time together, saying goodbye and returning home to…
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…