I’ve moved! It’s exciting, but the move was daunting because of the sheer amount of work that went into clearing out items from a place where my children grew up from 2007 onward. This place was our family home, housing much laughter, tears, and peace. History seeps through the walls,…
My mother-in-law, who has familial amyloid polyneuropathy (FAP), often experiences tingling and burning sensations as well as pain in her hands and feet. Because of that, she must keep them covered at all times. This is the reality of peripheral neuropathy. She also experiences other symptoms that…
Starting in late November and often lasting through March, the cold weather in much of the U.S. can be a burden for many patients with familial amyloid polyneuropathy (FAP). Those living on the East Coast or in the Midwest often face especially brutal winters. My mother-in-law’s FAP symptoms require…
A few months ago, I learned something new about my wife’s side of the family as we celebrated Thanksgiving. My mother-in-law suffers from familial amyloid polyneuropathy (FAP), which I already knew. But my wife’s grandmother told me that three of her own siblings had also been diagnosed with…
It’s summer here in Auckland, New Zealand, and as I look out the window at my weed-filled lawn, not only am I reminded that the grass needs mowing again, but also how time flies without qualms or quandary. It’s been 19 months since I lost my husband, Aubrey, to…
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…