In the lead up to Rare Disorders Month (March 2024), Rare Disease Day is a day of global solidarity, marked each year around the world on the last day of February to raise awareness and to advocate for equity for rare disorders.
We asked Jaime Christmas from the Health Navigator Charitable Trust’s Whānau Ora Voices of Experience Network (WOVEN) about her lived experience, why Rare Disorder Month is so important and what you do on 29 February.
"As a caregiver who was there with my late husband, who was diagnosed with ATTR Amyloidosis, this day is somewhat bittersweet for me.
Aubrey and I were married for almost 26 years, and he passed on May 22, 2022.
On the one hand, I understand the importance of recognising this day for all the lives that have been lost due to the lack of correct diagnosis, treatment and wrap-around support.
On the other hand, as a patient advocate leader for New Zealand Amyloidosis Patients Association, I leverage this day to push for awareness and education. This day provides the platform for me to tell the stories of patients and their families who often find themselves isolated and misunderstood by society.
It isn’t an easily understood ‘disease' space to be in as the illness is uncommon, especially for those with ultra-rare type conditions and diagnosis may not even be readily available, especially in this country.
With Aubrey, his genetic defect caused the misfolding of protein or amyloid. The misfolding turns normal amyloids, which we all carry, into rogue ones that deposit into organ tissues. In the end, his kidneys and heart tapped out. His journey lasted for nine years. In those nine years, we both saw how apathetic people can be about sickness they have not heard of. It’s a case where unless we, or people we love, get stricken we ignore what is out there.
This illiteracy is the bitter bit about Rare Disease Day. I must acknowledge that despite the sheer advocacy work done by people like me, we can feel like fish swimming upstream. So, if you are reading this article, I do hope that on February 29, you will:
- Spare a quiet moment to pay respects to every man, woman and child who has died in Aotearoa New Zealand from a rare disorder.
- Tell a friend, or research, about a rare disorder.
- Visit Rare Disorders NZ and see how you can help.
As American cultural anthropologist Margaret Mead said, "Never believe that a few caring people can't change the world. For indeed, that's all who ever have."
Jaime is the CEO and founder of the New Zealand Amyloidosis Patient Association (NZAPA) and also represents Rare Disorders NZ (RDNZ).