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…
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…
HATTR-PN
ColumnsThe Importance of Maintaining Our Well-being as Caregivers
Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it…
HATTR-PN
ColumnsThe Importance of Giving a Voice to Patients and Carers
A few days ago, I had the honor of presenting at this year’s Patients as Partners Europe virtual conference, an industry forum centered on…
HATTR-PN
ColumnsStaying the Course Despite the Trials We Face as Caregivers
Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting…
HATTR-PN
ColumnsThings I Wish I Knew at the Start of Our Amyloidosis Journey
It is a summer morning here in New Zealand. As I write this, a cool, gentle breeze blows through the house, and I am being…
HATTR-PN
ColumnsSearching for Peace Despite Chronic Sleep Deprivation
Sleep is an essential part of life that comes so naturally, from the moment we come into being. Yet sometimes we forget the impact that…
HATTR-PN
ColumnsThe Beauty of Healing Through Language
I can hear the shower going upstairs as I sit at my writing desk in my downstairs office. It is funny how the sound of…
HATTR-PN
ColumnsIn the New Year, I Will Focus on What Is True
2020 is almost at an end. In a few weeks, we will celebrate the holiday season, and before we know it, 2021 will be upon…
HATTR-PN
Columns‘Change the Way You Think About It’
“Surprise!” I watched familiar faces filter into the room where I stood stunned, not expecting the birthday event that was unfolding before me. I turn…
Recent Posts
- Early nerve damage seen in woman with rare TTR mutation
- AInylam initiatives aim to speed ATTR-CM diagnosis, coordinate care
- Blood test for Alzheimer’s may help in making hATTR-PN diagnosis
- Women with ATTR-CM face gaps in treatment, new study reports
- Real-world study finds Amvuttra helps keep hATTR-PN, life quality stable