Transcript
A Samoan mother from Auckland, Te'eva Matafai, has Long QT syndrome.
This a genetic cardiac condition where the heart rate can become dangerously fast and lead to sudden loss of consciousness or death.
Paediatric cardiologist from Starship Children's Hospital Jon Skinner explains.
"It's called Long QT syndrome because its named after a part of the ECG. Each heart beat is divided up into the alphabet. It goes P, Q, R, S, T from the electrical activity at the top of the heart towards the bottom and it is the prolongation of the Q, T phase of the ECG, which gives it its name."
Dr Skinner says it is common in New Zealand.
"It occurs at a frequency of about one in 2000 in the general population. We don't know exactly how frequent it is in the Pacific population, but as far as we can tell in New Zealand, it seems to be represented about equally amongst Maori and Pacific as it does amongst the other races in New Zealand."
Ms Matafai says her dad has also been diagnosed with Long QT and she thinks the disorder is the cause of death for her dad's two sisters.
"We believe that my two aunties passed away by it. Obviously in Samoa they would not have known that ... I think a lot of people don't know about it or aren't aware of Long QT syndrome because I definitely wasn't until dad got tested and his two sisters who just suddenly died and had no medical conditions whatsoever. They were fit and healthy."
Te'eva Matafai was informed by her family doctor that she's had Long QT for several years, but didn't know.
She says that one of the symptoms is black outs, which she had been having.
"I've always said "oh it's exhaustion" because I do a lot in my life, but speaking to the doctor, it's definitely linked to my Long QT. I think people should really seriously look at their lifestyles as well in terms of, if you've had black outs? Have you got it checked? There's a reason behind it and it could be a medical reason." 0:17
Dr Skinner wants people to know the syndrome is treatable.
"You have to avoid some medications because some antibiotics and some antihistamines for example, it can make the condition worse. The second thing is a regular beta-blocker. This is a medication which prevents the action of adrenaline on the heart."
Ms Matafai wants to raise awareness of Long QT syndrome.
"I think its too common that you hear nowadays that a lot of sudden deaths and it affects a lot of our young Pacific islanders aswell and people in general and prehaps not knowing that there's this condition that could have been prevented and it could be the reason why there's sudden deaths."
For more information on Long QT syndrome, visit the Cardiac Inherited Diseases Group New Zealand website.
This is Sela Jane Aholelei.
