Four Bay of Plenty stroke survivors are rallying Te Arawa and Mataatua whānau for three days to replace whakamā with whakaaro.
The Awhi Mai Stroke Trust founders are holding a conference in Rotorua, and at least 40 attendees were registered ahead of yesterday afternoon'sopening pōhiri at Te Papaiouru marae, Ōhinemutu.
About 9000 Kiwis have a stroke every year, including about 750 Māori, and strokes are a large cause of adult disabilities in New Zealand.
Awhi Mai member Rukingi Haupapa said the Rotorua conference's kaupapa was sharing "what works".
"We trustees want to show that we not only survived but we are now living ... We know how terrible it is at first."
He said for many Māori, having a stroke often lead to serious loss of mana, and then to anxiety and depression.
The effects often rippled from the stroke patient to whānau and friends.
Haupapa's stroke hit 15 years ago, and he could not even remember his name afterwards.
"I lost my memory. Since then I have met a lot of other Māori stroke survivors working their way through the minefield, who have had the same loss of self-esteem.
"It means you don't want to step out of your own home but if you do that you're not going to meet the people who can help. It is a double whammy."
After his stroke, he relearned te reo Māori, and has since completed a Bachelor of Teaching, Masters and now doctorate research focused on strokes and whānau in Te Puku o te Ika (Te Arawa and Mataatua).
"If I can do it, anybody can do it. I am not the brightest on the block."
He said attendees would be sharing their worst moments, but also the beautiful moments.
"Sometimes we get so caught up in the gruelling rehab that we forget about the beautiful things," Haupapa said.
"We want to share hope for others. If there is no hope than there is no future."
Attendees are being provided accommodation at Para te Hoata Marae and will spend the next two days sharing meals and mihi, doing workshops and evaluations.
Te Hotu Manawa Māori Trust (Toi Tangata) chief executive Megan Tunks said the conference would help develop matauranga Māori approaches to health.
"It is also important that strategies be developed in hui such as this that address systemic issues such as racism, access to culturally appropriate healthcare, research, policy decisions and funding."
She said strokes could stop whānau members from fulfilling roles on marae, from being caregivers, from passing on knowledge, and from contributing to household income.
The Rotorua conference was organised independently of the Stroke Foundation.
A spokeswoman said: 'We are interested in holding similar events in the future as we think this is a great opportunity to engage with those who have been affected by stroke in the Māori communities."
A Ministry of Health spokeswoman said the ministry had not held any Māori-focused stroke events like the conference happening in Rotorua, but it had funded three annual national awareness campaigns.
"We are working closely with district health boards to report stroke intervention/treatment for Māori as a key group within the general population."
What is a stroke?
A stroke is a "brain attack" when the blood supply to part of the brain is cut off.
The affected area of the brain effectively dies, and the body functions controlled by the brain part are severely impacted.
If you have high blood pressure and smoke, you're at a much greater risk of having a stroke.
It's important to start medical treatment as soon as possible because fast treatment can reduce brain damage and bring better outcomes.
Depending on the type of stroke, you can be permanently disabled but many people recover well.
Know the signs of a stroke, think FAST
Face: Is it drooping on one side?
Arm: Is one arm weak?
Speech: Is it mixed up, slurred or lost?
Take Action: Call 111 immediately.
A transient ischaemic attack – also called a mini-stroke – has similar symptoms but most people fully recover within a few minutes or an hour.