Our amyloidosis patient association here in New Zealand often holds routine catch-up sessions with the patients and carers that we support. I am a…
Sunrise Sunset – a Column by Jaime Christmas
HATTR-PN
ColumnsWe Won’t Stop Fighting for Positive Change in Healthcare Funding
I will always remember May 12 as a special day. That’s because last week, I spent that day with my daughter doing something close to…
HATTR-PN
ColumnsCourage Is Necessary When Making Difficult Decisions
It has been a week since my husband, Aubrey, and I received our first doses of the COVID-19 vaccine. We feel fortunate to have…
HATTR-PN
ColumnsA Little Understanding Can Go a Long Way for Rare Disease Sufferers
When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has…
HATTR-PN
ColumnsAs a Caregiver, I’m Learning to Chase Happiness
One activity I really enjoy doing is going for coffee dates with my girlfriends. This allows me to take a break from my normal routine…
HATTR-PN
ColumnsWhen Faced With Trials as a Caregiver, I Embrace Resilience
Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each…
HATTR-PN
ColumnsThe Difference Between Being a Caregiver and Being Caring
2013 was a landmark year for my husband, Aubrey, and me. That October, we received confirmation that Aubrey has hereditary ATTR amyloidosis. The results were…
HATTR-PN
ColumnsLetting Go of Expectations Helps Me Embrace My Husband’s Changes
Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some…
HATTR-PN
ColumnsWhen Faced With Unrelenting Pain, There Are No Heroes
In his book “1984,” George Orwell wrote, “Of pain you could wish only one thing: that it should stop. Nothing in…
HATTR-PN
Columns3 Ways I Strive to Live Intentionally Amid Amyloidosis Challenges
As I write this, my husband, Aubrey, is undergoing surgery to remedy his congested nasal passages, which have reduced the oxygen flow into his lungs.
Recent Posts
- For East Asian patients with ATTR-CM, Amvuttra is safe, extends survival
- Finger tapping test catches early, subtle nerve damage in hATTR-PN
- Anniversary of mom’s amyloidosis diagnosis brings hope, gratitude
- TTR gene mutation may not be nerve damage cause in certain hATTR cases
- Bone hormone levels signal heart disease severity in ATTR-CM: Study