One activity I really enjoy doing is going for coffee dates with my girlfriends. This allows me to take a break from my normal routine and spend time with those in my support network. As a carer, having people to confide in and share life’s journey with is vitally important…
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Some life events create impressions that stay with us forever. Our experiences, encounters, and journeys mold our character and hone our personality, making each of us into who we are today. What makes or breaks us when we face trials may be influenced by the particular calamity, but much…
2013 was a landmark year for my husband, Aubrey, and me. That October, we received confirmation that Aubrey has hereditary ATTR amyloidosis. The results were based on a biopsy of his gastrointestinal cells using the Congo red stain method of amyloid detection. I felt numb after hearing the…
Since my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013, my journey as his caregiver has taken me to some difficult places. The biggest challenge has been letting go of my expectations of what our relationship should look like and accepting what it has…
In his book “1984,” George Orwell wrote, “Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes.” I pondered writing about this…
As I write this, my husband, Aubrey, is undergoing surgery to remedy his congested nasal passages, which have reduced the oxygen flow into his lungs. It will take about 70 minutes. Turbinate reduction surgery is safe and straightforward for most people. Usually, the patient is monitored for a few…
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…
One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling all of the challenges that come with having a father stricken with hereditary amyloidosis. When my husband, Aubrey, was diagnosed in 2013, breaking…
Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it was a good read, as it reinforced the importance of staying well to be able to care for a spouse who is afflicted with…
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…
Recent Posts
- Heart rhythm problems common in adults with FAP-causing mutation
- The emotional burden of receiving negative genetic test results
- Analysis: RNA-targeted therapies are safe, effective for hATTR-PN
- Hereditary ATTR presents with more severe nerve damage
- Liver transplant, therapies mean longer life with hATTR, data show