Sunrise Sunset — Jaime Christmas

resilience, caring, expectations, pain, live intentionally, environment, well-being 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.

Navigating amyloidosis treatment can be challenging for older adults

As an advocate for the New Zealand Amyloidosis Patients Association since 2019, I am acutely aware that when there is no center of excellence or coordinated care structure in a country, it compounds the already heavy burden on diagnosed individuals, particularly older couples trying to navigate this devastating disease. Even…

HATTR-PN

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The Importance of Connecting With People Who Understand the Rare Disease Journey

In my columns, I share my experience as a caregiver to a spouse who suffered from hereditary ATTR amyloidosis. Whenever I sit down…

HATTR-PN

Columns

Living in the Present Can Help Us Better Manage the Future

After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign.

HATTR-PN

Columns

Early Diagnosis, Treatment Access, and Self-advocacy Are the Pillars of Hope With ATTR Amyloidosis

It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise…

HATTR-PN

Columns

Like David Attenborough, I Want to Use My Voice to Make a Difference

I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our…

HATTR-PN

Columns

I Learned the True Value of Friendship Amid Difficult Times

“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…

HATTR-PN

Columns

Appreciating Challenges Can Help Partners Form a Special Bond

I lost my husband, Aubrey, on May 22. This period of adapting to him being gone has been somewhat challenging for me. Although I…

HATTR-PN

Columns

The Importance of Thinking in Advance About End-of-life Arrangements

If you are new to my column, my name is Jaime, and I was a caregiver to my husband, Aubrey, until he passed…

HATTR-PN

Columns

Making the Right Decision at the Beginning Helped Me in the End

Some time has passed since I lost my husband on May 22. For nine years, Aubrey suffered from hereditary ATTR amyloidosis. Despite the…

HATTR-PN

Columns

In This Passageway of Grief, I Also Find Hope

After nine years of being a caregiver to a husband afflicted with hATTR amyloidosis, I can no longer lay claim to having that role.

HATTR-PN

Columns

Now That the End Is Here, I Think Everything Will Be All Right

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…

HATTR-PN

Columns

What Time Away From My Husband Taught Me About Love

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…

HATTR-PN

Columns

My Calendar Helps Me Remember Past Medical Events

In my work as a patient advocate for the New Zealand Amyloidosis Patients Association, I occasionally need to assemble content for the awareness…

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Sunrise Sunset — Jaime Christmas

Navigating amyloidosis treatment can be challenging for older adults

The Importance of Connecting With People Who Understand the Rare Disease Journey

Living in the Present Can Help Us Better Manage the Future

Early Diagnosis, Treatment Access, and Self-advocacy Are the Pillars of Hope With ATTR Amyloidosis

Like David Attenborough, I Want to Use My Voice to Make a Difference

I Learned the True Value of Friendship Amid Difficult Times

Appreciating Challenges Can Help Partners Form a Special Bond

The Importance of Thinking in Advance About End-of-life Arrangements

Making the Right Decision at the Beginning Helped Me in the End

In This Passageway of Grief, I Also Find Hope

Now That the End Is Here, I Think Everything Will Be All Right

What Time Away From My Husband Taught Me About Love

My Calendar Helps Me Remember Past Medical Events

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