FAP News Today Columns

June 16, 2021June 16, 2021

Why It’s Important for the Rare Disease Community to Avoid Isolation

COVID-19 Columns, FAP News Today Columns

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 Practitioners Amyloidosis Conference. I helped organize ... Read more

June 9, 2021June 9, 2021

Looking at Life’s Challenges Through a Different Lens

FAP News Today Columns

I often write about the challenges I face as a carer to a spouse afflicted with hereditary ATTR amyloidosis. I highlight the heavy impact this disease has had on me ... Read more

June 2, 2021June 2, 2021

I Share My Experience to Foster Compassion in the Rare Disease World

FAP News Today Columns

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 the stillness of the day, ... Read more

May 26, 2021May 26, 2021

Understanding the Guilt That Can Accompany Hereditary Disease

FAP News Today Columns

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 firm believer that mental health is ... Read more

May 19, 2021May 19, 2021

We Won’t Stop Fighting for Positive Change in Healthcare Funding

FAP News Today Columns

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 our hearts. We woke up ... Read more

May 12, 2021May 12, 2021

Courage Is Necessary When Making Difficult Decisions

COVID-19 Columns, FAP News Today Columns

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 this opportunity as New Zealand’s Ministry ... Read more

May 5, 2021May 5, 2021

A Little Understanding Can Go a Long Way for Rare Disease Sufferers

FAP News Today Columns

When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis. Since his diagnosis ... Read more

April 28, 2021April 28, 2021

As a Caregiver, I’m Learning to Chase Happiness

COVID-19 Columns, FAP News Today Columns

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 and spend time with those ... Read more

April 21, 2021April 21, 2021

When Faced With Trials as a Caregiver, I Embrace Resilience

FAP News Today Columns

Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each of us into who we are ... Read more

April 14, 2021April 14, 2021

The Difference Between Being a Caregiver and Being Caring

FAP News Today Columns

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 based on a biopsy of ... Read more

April 7, 2021April 7, 2021

Letting Go of Expectations Helps Me Embrace My Husband’s Changes

FAP News Today Columns

Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some difficult places. The biggest challenge has been letting ... Read more

March 31, 2021March 31, 2021

When Faced With Unrelenting Pain, There Are No Heroes

FAP News Today Columns

In his book “1984,” George Orwell wrote, “Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In ... Read more

March 24, 2021March 24, 2021

3 Ways I Strive to Live Intentionally Amid Amyloidosis Challenges

FAP News Today Columns

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. It will take about 70 ... Read more

March 15, 2021March 15, 2021

Create an Environment Where You Can Live Well With Rare Disease

FAP News Today Columns

Leading an association that supports and advocates for rare disease patients while being a caregiver to one certainly has shaped my outlook on life. To a larger extent, these roles ... Read more

March 1, 2021March 1, 2021

What I Wish I’d Known About How Hereditary Amyloidosis Affects Families

FAP News Today Columns

One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling all of the challenges that ... Read more