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 exchanging ideas about how to more readily provide therapeutics to patients. A vast majority of attendees were from the pharmaceutical industry, clinical research organizations, and…
Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting her late husband, who was afflicted with hereditary amyloidosis — the same condition my husband, Aubrey, has. I couldn’t help but get choked up…
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 serenaded by a symphony of native backyard birds. In moments like this, I am flooded with gratitude and peace. I bask in the knowledge that…
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 too much or too little sleep can have on our lives. I say “naturally,” but the truth is that falling asleep comes more easily for…
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 running water always makes me feel a little melancholic and contemplative. At the moment, I am dwelling on a question someone posed to me after…
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 us. The past year was mostly filled with bad news and unexpected events, and the turmoil caused by COVID-19 has impacted many people around the…
“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 50 tomorrow, and some close friends went to the trouble of organizing a celebration for me. I was thankful for the moment, and I felt…
I feel the coolness of the glass against my forehead. The shower is pelting warmth against my skin, but the water doesn’t feel very soothing today. I am tense as I block out thoughts of banging my head against the glass shower door. I know this sounds absurd, but today…
“I love you. If anything happens to me, you know where I keep the account details.” My husband uttered these parting words as I dropped him off for admittance into the hospital in April. His severe fluid retention had caused his feet and abdomen to balloon up while his…
My husband lives under the banner of his disease. This may sound hard-hitting, but it is the fact of the matter. The sooner carers appreciate that hereditary amyloidosis may transform their loved one into someone else, the better they will adapt to their altered relationship with each other. I say…
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