"One in two million" – George Moanaroa was diagnosed with acromegaly in 2022 and hopes to educate whānau on the rare condition. Photo / Te Ao Māori News
"One in two million" – George Moanaroa was diagnosed with acromegaly in 2022 and hopes to educate whānau on the rare condition. Photo / Te Ao Māori News
George Moanaroa credits the Māori spiritual and medical worlds for saving his life from acromegaly.
Diagnosed in 2022, Moanaroa’s rare variant affects one in two million people worldwide.
He aims to educate Māori communities about acromegaly, highlighting the importance of early diagnosis and support.
George Moanaroa believes the spiritual world of Te Ao Māori and the medical world joined forces to save his life.
Moanaroa (Waikato-Tainui) knew he was not like everyone else, and for years had suffered what was later diagnosed as acromegaly – a rare disease that causes abnormal growth in thehands, face, and feet.
“Mum said when I was born, I had big feet,” Moanaroa, 43, told the Herald.
“I knew I was not like all the rest of my siblings or the other kids.
“I was always called a giant but none of my whānau could reference me to a relative, so I knew I was the only one like me.”
A visit to a new GP in 2022 changed his life forever.
“My main symptom was having an upset stomach. The doctor looked at my feet and hands and instantly diagnosed acromegaly,” Moanaroa, the youngest of six siblings, said.
While around 1000 people in New Zealand live with acromegaly, Moanaroa’s specific variant is so rare that it affects only one in two million people worldwide.
Acromegaly is a hormonal disorder that results in the pituitary gland producing excessive amounts of growth hormone during adulthood.
It is sometimes associated with gigantism, and some of the symptoms include enlarged bones in the skull, face, jaw and hands.
“When I was 35, I started noticing the changes as my feet were getting bigger and bigger,” Moanaroa said.
“I couldn’t fit shoes as I had to keep sizing up.
“When I was finally diagnosed, I found a great feeling of relief and understanding. I finally knew the why.
“I had incredible support from my whānau and the medical community.”
Although it took decades for Moanaroa to get a proper diagnosis, he said he was lucky to finally receive answers that gave him access to treatment and support. Life expectancy for Māori with acromegaly is between 40 and 50 years old.
“Had I not been diagnosed when I was in 2022, I would have passed by now,” Moanaroa said.
“There is a small window, and if you get to 40 and it is undiagnosed, it becomes very aggressive.
“It’s like a balloon and if you keep putting in air, it eventually pops.
“The medical community became fascinated with my diagnosis so I received extra attention and treatment that others diagnosed with acromegaly wouldn’t normally receive.”
Actor and wrestler Andre The Giant suffered from acromegaly.
Accessing the right treatment has been an ongoing journey, as Moanaroa balances unsubsidised treatments locally and overseas.
He said that whakapapa insights, and understanding his rare disorder from a spiritual perspective, helped him acknowledge and embrace his diagnosis.
After surgery, Moanaroa says his recovery was amazing, with the swelling in his fingers, feet and face shrinking significantly.
He acknowledges the part that tikanga Māori played in his healing journey.
“Especially with my tūpuna, with my whānau and my whakapapa. I was like, ‘we got this’.
“There was a beautiful plane of the two worlds of the Māori and the medical.”
Now Moanaroa wants to help equip more whānau Māori with the knowledge and skills to recognise acromegaly and other inherited rare disorders. He has developed a presentation he wants to take to marae across the motu to educate communities about the condition through a te ao Māori lens.
“It seems that many Māori aren’t getting early diagnosis for acromegaly due to the pre-misconception that Māori are just born big,” said Moanaroa.
“Currently, there is a lack of a whānau approach to the diagnosis process.”
Members of Moanaroa’s own whānau live with symptoms of acromegaly but are yet to receive a diagnosis.
“The life expectancy for acromegaly for Māori is only 40 to 50 years old. I’m grateful that I’ve been able to surpass this, but I feel for our whānau who aren’t getting their diagnosis.”
Rare Disorders NZ chief executive Chris Higgins said that for many of the 300,000 whānau living with a rare disorder, the diagnosis process can be lengthy and challenging.
“According to our most recent white paper, one in five whānau had to wait over 10 years for a rare disorder diagnosis, and 61% were misdiagnosed at least once before the final diagnosis was confirmed.”
Higgins also said that due to colonisation and negative experiences with institutions and health systems, whānau Māori with rare disorders face layered disadvantages in the health system. He said there is a great need for a co-ordinated approach to rare disorders that acknowledges Te Tiriti o Waitangi obligations to inform sensible future health policy.
However, Rare Disorders NZ is still awaiting the implementation of the stalled national Rare Disorders Strategy.
“The rare disorders community needs better support within our current health system. In order for this to be beneficial for the entire community there needs to be urgency and a mātauranga Māori-led approach to how we move forward,” said Higgins.
“The strategy would help to co-ordinate knowledge and experts to improve the current rare disorders diagnosis processes.”
While the national Rare Disorders Strategy remains in limbo, Moanaroa refuses to wait. He is taking action now to support his community, ensuring others don’t have to face their diagnosis alone.
“A kaupapa Māori approach towards acromegaly, and other rare disorders in Aotearoa, would see Māori recognise potential rare disorders in their own whānau, and receive much-needed diagnosis and support.”
Additional reporting Riria Dalton-Reedy, Te Ao Māori News.
