Young adults at risk for familial amyloid polyneuropathy (FAP) face unique psychological and social challenges, and likely would benefit from tailored healthcare support when undergoing pre-symptomatic testing for the rare disease. That’s according to a new study by researchers in Portugal, who conducted interviews with more than a dozen…
The past few weeks have been challenging for my extended family and me. My mother-in-law, who has familial amyloid polyneuropathy (FAP), experienced a health setback that required an extended hospital stay. Before this, she seemed to have achieved stability in her daily life, and improvements in her health were…
It has been very encouraging to witness treatment advancements that target ATTR amyloidosis. Although a cure is not currently available, pharmaceutical research shows promise in the development of drugs to slow the progression of amyloid deposits, which causes the disease. ATTR amyloidosis affects multiple organs in the…
“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” — Oprah Winfrey On May 22, I lost my husband, Aubrey, to hereditary ATTR amyloidosis. He was my best…
Having a chronic illness is never easy, both for the sufferers and their caregivers. My name is Jaime Christmas, and my husband, Aubrey, started feeling unwell in late 2012. It all started with numbness in his fingertips, but it wasn’t until he lost his taste for food that he…
Every week I sit at my desk and ponder what I should write about. As I stare out the window that faces my street, I reflect on everything my husband, Aubrey, and I have encountered on our amyloidosis journey, and the tools that have helped us survive. I’m not…
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
In my role as a leader of the New Zealand Amyloidosis Patients Association, I’ve had the privilege of forging relationships with many wonderful human beings. The people I’ve met while running this charity, established in 2019, have enriched my life and pushed me further than I could’ve ever imagined.
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 have allowed me to find my calling within the campaign space, where I’m pushing for positive changes to the present…
The onset of familial amyloid polyneuropathy forces daunting shifts in the relationships between caregivers and their loved one. When my mother-in-law was diagnosed with polyneuropathy, she began to despair of life itself. Her sensitivity to touch made things that were once part of everyday life, such as hugging, nearly impossible.