Lately I’ve had to remind my husband that he is not his disease. Aubrey was diagnosed in 2013 with hereditary ATTR amyloidosis, and after…
Columns
HATTR-PN
ColumnsWhy It’s Important for the Rare Disease Community to Avoid Isolation
By the time this column is published, nearly two weeks will have passed since the kick-off of the two-day New Zealand Patients, Carers & Healthcare…
HATTR-PN
ColumnsLooking at Life’s Challenges Through a Different Lens
I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact…
HATTR-PN
ColumnsI Share My Experience to Foster Compassion in the Rare Disease World
I count myself very fortunate to be in a position where I can speak to readers. Every week I sit at my desk, and in…
HATTR-PN
ColumnsUnderstanding the Guilt That Can Accompany Hereditary Disease
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…
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…
Recent Posts
- Understanding the patient’s perspective in a fast-paced world
- Attruby may reduce outpatient heart failure worsening in ATTR-CM
- Being a caregiver means becoming an expert on your loved one’s disease
- Eye dryness, floaters common in hATTR-PN, but more research needed
- Approval of Beyonttra in Brazil brings new treatment options for ATTR-CM