How I’m living a purpose-driven life after losing my husband
Despite difficulties, my patient association still makes a difference for many
Since January, the amyloidosis association I lead here in New Zealand has seen our patient numbers grow like never before, primarily because of newer diagnostic tools and more awareness among doctors about the disease. We’re receiving more emails from diagnosed individuals seeking advice on what to do next, and that’s been both good and not so good.
It’s good because it appears fewer sick people are falling through the cracks in this country. Back in 2013, when my late husband, Aubrey, was finally diagnosed with hereditary ATTR amyloidosis, there were no local support groups that we could go to for advice. We depended on his cousins in England for word on what to do, and of course we did our Google searches.
Surfing online, however, can still leave patients unable to confirm whether what they see is current and valid. Anything we saw, for instance, should’ve been cross-referenced with doctors, but we found it better to refrain from bringing up our self-investigation, as some physicians took offense to it. So most of the time, we saw information but couldn’t go anywhere with it.
Instead, we relied solely on the recommendations and expert advice from local specialists. To their credit, those most involved with Aubrey’s care tried their best to help him. Despite the lack of approved and funded treatment here, medication was dispensed to alleviate his symptoms and keep the manifestation of the progressive amyloid deposits at bay.
From 2013 to 2019, though, Aubrey’s health continued to deteriorate. Once our doctors said we’d exhausted every local avenue to help, we realized we had to access treatment from overseas if he were going to live. We had to do that ourselves because we couldn’t rely on the New Zealand health system.
That’s how our patient association was born: out of desperation. With the NZ Amyloidosis Patients Association, we garnered support from pharmaceutical companies involved in clinical trials. Finally, Aubrey was able to be placed on a drug that, in hindsight, gave us more time together.
Challenges and successes
Looking back since Aubrey’s passing in 2022, I’m grateful that we built an organization that can assist others diagnosed with this illness. On the flip side, targeted treatment access is still unavailable here, which is the not-so-good side of my work that I alluded to above. It’s exasperating to tell people to stay positive without being able to offer them the help they desperately need.
But that’s not a reason for me to throw in the towel. It’s better to be able to provide a service, giving updates on the latest information about the condition. It’s better that I still offer a kind word of encouragement, share my personal experience, and connect them to a growing network of other patients. It’s all better than letting them flounder in the dark, experiencing the bleakness of feeling alone.
I try to remember something the visionary leader Martin Luther King Jr. said: “Whatever affects one directly, affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of reality.”
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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Frances mclaughlin
I have kidney trouble and my bladder is also affected so found the information very useful