Holiday travel reminds my family just how important a wheelchair-accessible van is for transporting my mother-in-law, who has familial amyloid polyneuropathy. It can be difficult for neuropathy patients and their caregivers to be home all the time, and traveling may be necessary to keep the holiday spirit alive.
I recently had the pleasure of attending an Amyloidosis Alliance conference in Madrid, which brought together advocates from around the world who serve the transthyretin amyloidosis community. This includes the familial amyloid polyneuropathy (FAP) and amyloid light chain or primary amyloidosis communities. Attendees discussed the…
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…
My mother-in-law has always valued her autonomy. The pain of her peripheral neuropathy, the hallmark symptom of familial amyloid polyneuropathy (FAP), leads her to feel helpless at times. This helplessness gives way to grief and despair. Our family does our best to let our…
It has been 17 months since my husband, Aubrey, passed away due to complications of hereditary ATTR amyloidosis. Following his diagnosis in 2013, Aubrey’s journey was wrought with many untold challenges. His pain and struggle were visible to our family, including our four children. As his wife…
My mother-in-law, who has familial amyloid polyneuropathy (FAP), consistently adheres to her prescribed treatments, which has improved her mobility and overall mood. Because of this, she can handle more physical activity during family time. This positive change over the past few years, including those when I took a…
Medication adherence is crucial to managing familial amyloid polyneuropathy (FAP). Left untreated, FAP can have life-threatening consequences. As an article published in U.S. Pharmacist notes, according to the World Health Organization (WHO), medication adherence can have a more direct impact on patient outcomes than even the…
After a hiatus of three years, it is with a mix of emotions that I return to writing this column. Allow me to reintroduce myself: My name is Ezekiel Lim, and I continue writing to share once again the journey of caregiving for my mother-in-law, who has struggled with…
On Sunday, March 19, I appeared on New Zealand’s 1News to discuss my journey as a caregiver to my late husband, Aubrey, who had hereditary ATTR amyloidosis. I now face the reality that any of our four children could have the genetic mutation that causes the…
This column has been a year in the making. When my late husband, Aubrey, passed away in May 2022 from hereditary ATTR amyloidosis, I couldn’t articulate my thoughts and feelings to paper or screen. Instead, my mind was filled with questions about how to move forward as a…