It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise in the development of drugs to slow the progression of amyloid deposits, which causes the disease. ATTR amyloidosis affects multiple organs in the…
Sunrise Sunset — Jaime Christmas
Jaime Christmas is a patient advocate and columnist based in Auckland, New Zealand, with her cheeky doggie, Akira. She was a caregiver to a spouse who was afflicted with hATTR amyloidosis. Now she fights for equitable treatment and support for diagnosed patients and their caregivers. Although she now lives without the daily challenges of being a caregiver since her husband’s passing in 2022, she hopes to be still an encourager and listening ear to those presently walking the journey she knows only too well.
Hereditary diseases not only affect the body, but they also ripple through families, shaping relationships, identities, and mental health. I know this reality all too well. My late husband, Aubrey, was diagnosed in 2013 with hereditary ATTR amyloidosis, a genetic disorder caused by mutations in the TTR gene.

I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our planet. One clip featured walruses stranded on top of a cliff in the Arctic. Unaware of how high they are and confused by…
“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” — Oprah Winfrey On May 22, I lost my husband, Aubrey, to hereditary ATTR amyloidosis. He was my best…
I lost my husband, Aubrey, on May 22. This period of adapting to him being gone has been somewhat challenging for me. Although I thought I had come to terms with it in the weeks following his death, grief has a knack for swinging back and hitting me…
If you are new to my column, my name is Jaime, and I was a caregiver to my husband, Aubrey, until he passed away on May 22. Aubrey had been diagnosed with hereditary ATTR amyloidosis. For nine years, he fought bravely against a disease that robbed him…
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…
Recent Posts
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- The emotional burden of receiving negative genetic test results
- Analysis: RNA-targeted therapies are safe, effective for hATTR-PN
- Hereditary ATTR presents with more severe nerve damage
- Liver transplant, therapies mean longer life with hATTR, data show