Like David Attenborough, I Want to Use My Voice to Make a Difference

I recently watched a documentary narrated by British naturalist David Attenborough about how climate change and deforestation negatively affect animal life on our planet. One clip featured walruses stranded on top of a cliff in the Arctic. Unaware of how high they are and confused by the shrinking ice cover underneath them, many tragically fall to their deaths.

It was difficult to watch these beautiful, innocent creatures die due to shifts in our natural environment.

The segment also showed the reactions of people watching the walruses tumble off the mountainside. It was a painful end for the animals, but there was nothing the people could do.

I couldn’t help but draw a comparison between the walruses and those afflicted with a rare disease. I am not suggesting climate change contributes to rare disorders. Instead, I’ve found that many people who develop lesser-known conditions often feel like the earth is shrinking underneath them. Eventually, they are pushed over the edge due to lack of support, information, and treatment options. Availability of these resources may depend on the country where they live.

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My late husband, Aubrey, had hereditary ATTR amyloidosis. He passed away on May 22 after nine years of fighting and hoping to access medicine that could prolong his life. Because we live in New Zealand, there are no amyloidosis treatments available, and medical support is lackluster. In 2019, we started a patient association to support people with amyloidosis. Based on our work, I estimate that about 200 people in our country have the disease, but the number could be higher due to underdiagnosis.

I was a caregiver to my husband at every step of his journey with the disease. His pain and suffering still reverberate within me, even though he’s no longer alive. His tenacity in holding on to life until the very end has become a thorn in my flesh. I play back the hours before he passed and still wonder if more could have been done.

Perhaps I have yet to accept his death, and this questioning is a part of the grieving process. I feel cheated that the foundation we stood on — our country’s healthcare system and government legislation — wasn’t strong enough to bear the weight of Aubrey’s illness.

In some countries, including New Zealand, rare illness isn’t at the forefront of healthcare. The smaller number of people afflicted is often an excuse to overlook and underfund.

However, just as the death of the walruses provoked horror and anguish in a roomful of people, shouldn’t the countless and unfair deaths of those with rare illnesses solicit the same reaction?

Now that my husband is no longer with me, I feel even more of a responsibility to speak out and highlight the need for positive change. Just as Attenborough lends his voice to speak up for animals, I want to use my voice and experience to speak about the unfairness of being unable to live life to the fullest and receive equal opportunities due to a rare disease.

As French philosopher Gaston Bachelard said, “What is the source of our first suffering? It lies in the fact that we hesitated to speak. … It was born in the moment when we accumulated silent things within us.”

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.