Sunrise Sunset — Jaime Christmas

When you live with a rare illness, it can affect every facet of life. I am a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis. Since his diagnosis in 2013, the…

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.

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…

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…

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…

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.

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…

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…

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…

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…

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…

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…