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.

ATTR amyloidosis treatment exists, but for many, it’s not accessible

A transthyretin amyloidosis (ATTR) diagnosis is life-altering. This progressive disease causes abnormal protein deposits to slowly accumulate in structures such as the heart and nerves. Left untreated, ATTR cardiomyopathy (ATTR-CM) can shorten life expectancy to within a few years after diagnosis. My late husband, Aubrey, was diagnosed with…

HATTR-PN

Columns

Allowing Time to Let Go After the Loss of a Husband

Two weeks after the passing of my husband, Aubrey, my four children decided that the company of a new puppy…

HATTR-PN

Columns

Collaboration Between Patient Advocates and the Scientific Community Brings Me Hope

By the time this column is published, I will be halfway across the world, traveling to Heidelberg, Germany, for the International Symposium on Amyloidosis.

HATTR-PN

Columns

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…

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Sunrise Sunset — Jaime Christmas

ATTR amyloidosis treatment exists, but for many, it’s not accessible

Allowing Time to Let Go After the Loss of a Husband

Collaboration Between Patient Advocates and the Scientific Community Brings Me Hope

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

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Latest News

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