Q1: Tell us about your story with Bionews.

A: Bionews actually knocked on my door. I run a patient advocacy group here in New Zealand, and Matthew Lafleur initially reached out to me through Facebook. He inquired if anyone in our patient association would be interested in contributing as a columnist. When I received the message, I thought to myself, “Well, I could do that!” Everyone at Bionews seemed like really great people who were genuinely dedicated to advocating for patients with rare conditions. Almost immediately, my first article was published on October 28, 2020, and I haven’t looked back since. My writing has been incredibly helpful in my journey as a caregiver for my husband.

Q2: You have advocacy experience prior to Bionews, but did you have any background in writing before starting here as an advocate?

A: Before my husband fell ill, I maintained a blog where I shared stories about my pets. It was a wonderful outlet for sharing my life experiences. When the opportunity with Bionews presented itself, I had no doubts about my ability to write; my main concern was whether my writing style would fit the column’s needs. I was unsure if I could convey the messages they wanted me to share. Fortunately, the Bionews team was fantastic at clarifying their expectations and providing guidance, helping me grow as a writer. One aspect I truly appreciate about writing for Bionews is the person-to-person, genuine writing style; it never feels too corporate.

Q3: “Sunrise Sunset” is the name of your column. What’s the significance there?

A: I picked it because every day, when I wake up, there is this journey I go on with my husband as his caretaker. The day starts and ends every day. Whether it was good or bad, you have another opportunity to wake up again and start over. It was important for both of us to not go to bed feeling discouraged. It’s an intentional mindfulness to wake up feeling encouraged and ready to start each day with positivity. Bionews gives me an outlet to express what I am carrying in my heart and release it so that I can start over.

Q4: Your late husband, Aubrey, was diagnosed with hATTR amyloidosis. What were those early moments like?

A: It’s a very interesting disease. Under this umbrella, there are many different types. We believe that the original carrier was his grandmother on his father’s side. Both his grandmother and his father passed away from the disease. It was extremely rare back in the ’90s. We knew there was a potential for him to have it, but we didn’t want to base our future on what could happen. So, we got married and continued to live our lives like normal.

Q5: Do you think the fact that there wasn’t a lot of information early on potentially helped you and your husband live in the moment early on?

A: Hindsight is always 20/20. Perhaps there was a sense of bliss in carrying on with life. We had children and raised a family together like anyone else, and we never really gave it much thought early on. Although it’s a hereditary condition, it doesn’t manifest until later. You don’t really have symptoms creeping up on you. Aubrey’s condition didn’t start showing itself symptomatically until he was in his 50s. By that time, we already had four children. In fact, there were numerous times when he was misdiagnosed, to the extent that one doctor told us he didn’t have the condition, only for us to find out a couple of years later that he did.

Q6: With a disease this rare, do you think some of the misdiagnoses are from doctors just not knowing much about it?

A: Only seven years ago in New Zealand, there wasn’t much information about hATTR amyloidosis. In fact, there wasn’t even a clear diagnosis pathway. Today, there is significantly more knowledge and research available. In New Zealand alone, we are seeing an average of 400 patients diagnosed with the wild-type. That’s a lot. For the genetic variant, there are 60 to 80 families in this country who have the condition. With these advancements, we are seeing many more diagnoses and an increase in knowledge. You couldn’t say the same thing in the ’90s.

Q7: With Aubrey’s condition being hereditary, how has that affected your children?

A: Early on, Aubrey and I didn’t even want to have our children tested, primarily because of the lack of treatment options. We didn’t want something like this to impact the decisions they make in their lives. However, with advancements in research and the movement toward finding a cure, we have encouraged our kids to get tested.

Q8: What do you remember most about Aubrey’s moment of a positive diagnosis?

A: Prior to his diagnosis in 2013, we realized that he probably had shown signs and symptoms two years earlier. I remember asking him, “Do you think that the pins and needles and numbness you felt were early signs of the condition?” He admitted that he had thought about it, but he just didn’t want it to be real. We were living in limbo for a while, dealing with the fear of the unknown. In 2013, it was almost as if overnight he lost his sense of taste. That’s when it all became too real to ignore. Food made him feel sick, and that was followed by weight loss. At that time, too many things were adding up that just weren’t normal. After a positive biopsy, we were able to confirm that he had the condition and that it was affecting his digestive tract. In a way, it was a comforting moment because we could put an end to the guessing. However, it was also emotionally overwhelming given that it was a terminal diagnosis.

Q9: The transition from wife to caregiver is significant. What were the challenges?

A: I often write about the personal challenges of being a caregiver. You get married, have kids, and you’re just a husband and wife. You think you’re going through a trajectory of normal life. Suddenly, things shift, and you have to navigate a different path that is thick with vegetation and uncertainty. I really had to come to a crossroads: How do I balance being the person who cares for him while also taking care of myself? You’re still a person with wants and needs. I had just finished my degree to become a psychologist, and after this diagnosis, my needs and wants became secondary. It’s a lot to manage. For the first few years, I did everything I could to be the best caregiver, wife, and mother. What I found is that you can’t excel at all three; something has to give. It wasn’t easy, especially living in a country where there is no treatment. Over time, I had to become more confident and step into a role where I was the primary voice in the room with his doctors, which can be difficult when you want to feel heard. In that way, you almost undergo a sort of metamorphosis.

Q10: What pitfalls in the medical system did you notice?

A: This is a huge issue in the rare disorder space. Awareness is one of the biggest problems. If people aren’t aware, particularly healthcare practitioners, not much will happen. There is an unrealistic expectation for doctors to know everything, but they don’t—especially when it comes to rare conditions. We need to do a lot more work at the ground level, even in medical schools. Why aren’t we spending more time focusing on rare conditions? If you’re a doctor, you might eventually encounter a patient in a clinic who has one of these rare conditions, which often leads to a misdiagnosis. For amyloidosis in New Zealand, it wasn’t so long ago that there was almost no understanding of the condition; even the pharmaceutical companies weren’t aware of it. Since starting my own advocacy, we’ve been able to bring clinical trials to New Zealand, which is often the best route for most rare disease patients, as there aren’t typically approved treatments available. For many patients, clinical trials are their only hope.

Q11: What do you think is the best way forward for both patients and providers?

A: I think you have to drill down to the local level to enact real change. Here in New Zealand, many people live in remote areas and may not even have access to a large hospital. This means that it will be the general practitioners at family clinics who identify the symptoms of rare disorders and order the necessary tests. Many patients will never make it to a specialist or a large hospital. If we can educate doctors at every level to recognize these signs, I believe we can enact real change.

Q12: How has your advocacy changed since your husband passed away?

A: When Aubrey passed away in 2022, I questioned my relevancy as an advocate. I couldn’t write about the daily challenges of being a caregiver because my husband was gone. I also wasn’t sure that people would even be interested in my advocacy. Kudos to the Bionews team; they encouraged me to keep writing because they felt I still had an impact to make. They also introduced me to people who had been in similar situations and helped me learn how to move forward. I’m still concerned that I’m not writing from a place of relevancy, and I haven’t overcome that yet. I hope that whatever I write is still helping people out there. I’m trying to get the narrative out that highlights the challenges of rare disorders to get people to pay attention—the challenges in New Zealand, the importance of empowering caregiver and patient voices. I’m still figuring things out.

Q13: How has Bionews helped you reach the next level of advocacy?

A: Bionews has allowed me to produce article after article and to discuss my advocacy. They’ve also acted as a counselor who sits across the table from me and listens to my pains, thoughts, and concerns. They have helped me immensely throughout my journey. Without this outlet, the burden I carried would have been much heavier. It was also a way for me to express to my husband what I was struggling with through my writing. He had enough on his plate, so I never wanted to sit down and tell him about my struggles. Through my column work, he was able to gain a glimpse into my life without having to address it directly. I can’t even explain how much being on this platform has helped me as a caregiver, a wife, and a mother.

We appreciate Jaime for taking the time to sit down with us and share her and her husband’s stories. If you’d like to hear more from Jaime or learn more about her work, she has put together a selection of her favorite columns that you can read below.

• You Are Stronger Than You Think
• Even Superheroes Have Sidekicks
• How to Prevent Burnout When Caring for a Loved One
• The Beauty of Healing Through Language
• Things I Wish I Knew at the Start of Our Amyloidosis Journey