Losing both her father and her sister to Huntington’s Disease more than twenty years ago, had a profound effect on Joan Carew but she hopes that by sharing her experience of the disease through the Easter wānanga she and her cousin, Bessie McCabe organised, others will gain an insight into the debilitating genetic disorder.
Te Kotua Whānau Ora Wānanga was a four-day event aimed at bringing the wider Kotua whānau together in Nelson, to meet each other and reconnect, with a key empasis on learning more about Huntington’s Disease and its relationship to their whakapapa.
Joan (Ngāti Koata, Ngāi Tahu, Ngāti Rarua, Te Atiawa, Ngāti Tama, Ngāti Toa), says Huntington’s disease is an inherited brain disorder that causes cells in specific parts of the brain to die, which results in impairment of both mental capability and physical control. Most people develop signs and symptoms of the disease in their 30s or 40s but it can emerge earlier or later.
“It is a genetic disorder that has been identified in our whānau through genetic testing and it’s been shown that if your tupuna has it, it will pass down through the generations and there will be a chance that you will also have it. A high percentage of our whānau has been affected and it’s been very sad to see so many of our people die young,” she says.
Joan’s own father passed away at the age of 68 and her sister, Sharon was just 45 years when she died from the disease.
“When my sister began displaying symptoms we didn’t know the cause. She was tested for cancer initially but then a neurologist phoned us and after research, we discovered the Huntington’s gene had been passed down from one of our European tipuna. We later held a whānau hui at Whakatū Marae and thereafter a geneticist came from Wellington to test us all. Of the 80% of us who got tested back then, at least ten have since passed away from the disease.
“When my sister was diagnosed it really brought the disease to our attention and although it is incurable, I believe it is possible for whānau to learn coping strategies, both as a patient or as a carer. This was one of our main priorities of our Wānanga – helping others to understand that it is possible to live and create a better quality of life for Huntington’s patients by opting for a healthier lifestyle.”
“When my sister was diagnosed it really brought the disease to our attention and although it is incurable, I believe it is possible for whānau to learn coping strategies, both as a patient or as a carer. This was one of our main priorities of our Wānanga – helping others to understand that it is possible to live and create a better quality of life for Huntington’s patients by opting for a healthier lifestyle.” she says.
Supported by Te Pūtahitanga of Te Waipounamu in partnership with Pharmac, the Easter wānanga featured guest speaker, Jeanette Wiggins, the Huntington’s Disease Adviser for the Wellington Huntington’s Disease Association.
Over 100+ people attended the event, which Joan says would never have happened without Te Pūtahitanga support.
“Their amazing ongoing support has meant we’ve been able to drive this kaupapa forward and bring in prominant experts to talk to us, so everyone in the extended whānau can come together and learn more.
“Te Pūtahitanga have shown us they care and that’s been very important to us. They allow you to express yourself, what you want to achieve and how you’re going to go about it. “They’re genuine and their consistent communication with us has been incredible. It’s important to know that support is there and I really think this wānanga will be a benchmark, a breakthrough event for our whānau.
“It can be very difficult to think you might have inherited an incurable disease but even for those who don’t want to immediately acknowledge the possibility, I’m hoping the wānanga will provide a platform for them too – to provide them with a safe place to talk with others who may feel the same way.
“We all have a lot of learning to do and it’s important that we learn to be understanding and tolerant of each other,” she says.