Earlier this month, I read something in the Amyloidosis News Today newsletter that rekindled my curiosity about the investigational gene-editing therapy nexiguran ziclumeran (nex-z).
Columns
HATTR-PN
ColumnsNavigating the risk of falls with hATTR amyloidosis
Yesterday, I took a tumble. Hands full, I hit the arm of the sofa just below my ribs, then my knee hit the floor. “Way…
When my late husband, Aubrey, was living with hereditary ATTR (hATTR) amyloidosis, no two days were ever alike. One day, he might manage reasonably…
Note: This column describes the author’s and his late brother’s own experiences with off-label diflunisal. Not everyone will have the same response to treatment. Consult…
ATTR-CM
ColumnsTaiwan’s summer heat teaches us to live a calm, slow life
In the middle of a heat wave in the United States, I flew to Taiwan to visit my parents. Even though I had just acclimated…
When my late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, our world changed overnight. We had a diagnosis, but not a…
Anniversary of mom’s amyloidosis diagnosis brings hope, gratitude
I joined my mom’s cardiology appointment remotely last week. It marked the one-year anniversary of her diagnosis, and her doctor ordered a few tests to…
When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the…
A good friend of mine sadly passed away last month in a hospital in New York City. When I received the news, I couldn’t believe…
ATTR-CM
ColumnsUnderstanding the patient’s perspective in a fast-paced world
I was sick for more than a week recently. The slow recovery gave me a glimpse into a chronic disease patient’s point of view —…
Recent Posts
- Weighing the pros and cons of participating in a clinical trial
- Wrist biopsy may aid in early detection of heart disease
- Study links hATTR-PN mutations to symptoms beyond nerve damage
- Navigating the risk of falls with hATTR amyloidosis
- Trial evaluates drug’s potential to reverse ATTR-CM heart damage