Disease detectives are working to save families from heart-stopping conditions – Stuff.co.nz

Dominico Zapata/Stuff

Some families experience several unexpected deaths before finding out about an inherited heart condition, Waikato Hospital cardiologist Martin Stiles said.

A fit rower revived after his heart stopped, or a young mother who unexpectedly collapsed they could be among the cases for heart disease detectives to solve.

And if the evidence points to an inherited heart disease, genetic testing could show whether others in the whnau should protect themselves against a potential killer.

Some families have multiple unexplained deaths before getting an answer, Waikato Hospital cardiologist Martin Stiles said.

For example, there were a number of sudden deaths and near misses in young mums in a Waikato family prone to a heart disease which most commonly affects women who have recently given birth.

READ MORE: * Tuatara memorial brew raises money, awareness for silent heart conditions * Why are people in Hawke's Bay and Whanganui needing angiograms waiting longer than those in Wellington? * Jonty Carran's family still searching for answers after their son's sudden death * Sudden cardiac arrest: Death is the first sign something is wrong

If you can think of a person youre least likely to want to die suddenly, I think its probably a young mother, Stiles said.

You cant underestimate the impact of a young sudden cardiac death event on a community ... It's quite dramatic.

Stiles recently led the creation of international guidelines for the people trying to find answers for families like these, and hopes they help prevent deaths around the world.

The process took 18 months and involved 28 experts from 13 countries.

Stiles led the development of international guidelines for the detective work of investigating Sudden Unexplained Death (SUD) and Sudden Cardiac Arrest (SCA).

The guidelines are for two groups of people - and their families, he said.

Those who died suddenly, without explanation, and those who survived a cardiac arrest, but want to know why, and how to stop it happening again.

They are mainly intended for people aged one to 40.

Hes mapped out the effect of inherited conditions at family hui, drawing family trees on whiteboards.

The way we indicate on a family tree whos died is a diagonal line through the person, said Stiles, who is also an associate professor at the University of Aucklands Waikato Clinical School.

Putting all the diagonal lines on the family tree and stepping back is quite horrifying.

New Zealand is fairly unique in having a team of heart disease detectives which receives cases the Cardiac Inherited Diseases Group.

However, the group wants to improve resourcing and access to testing around New Zealand, and will put its case to district health boards, Stiles said.

Dominico Zapata/Stuff

You cant underestimate the impact of a young sudden cardiac death event on a community, said Stiles, who is also an associate professor at the University of Aucklands Waikato Clinical School.

But while getting an answer can be a relief, a diagnosis can have wider impacts on peoples lives.

Once, a man who had just completed costly helicopter pilot training found out he couldnt fly because of his inherited heart condition.

A diagnosis could affect what kind of work a person can do, life insurance, or even bring up paternity issues.

Psychological support is recommended, Stiles said.

Some people choose not to know, Stiles said, though people who have children generally want to.

And once they know the risk factors of the disease such as exertion, or a person being sick with fever they can be managed.

The initial investigation of an unexplained death or cardiac arrest takes a team with assorted specialist skills.

And they may end up working with whnau over years or decades.

But the genetic testing is only warranted if clinicians have a diagnosis in mind, he said.

If youre just taking a scattergun approach in the hope that youll turn up something that caused it, that can actually raise more questions than it solves.

Stiles hopes the investigation guidelines, which give the gold standard, can have a wider impact than he can as a single doctor.

Potentially, youre helping people in other countries that youve never even visited, and patients who you're never likely to meet. So that is satisfying to know.

The work led by Stiles is the 2020 Asia Pacific Heart Rhythm Society/Heart Rhythm Society Expert Consensus Statement on the Investigation of Decedents with Sudden Unexplained Death and Patients with Sudden Cardiac Arrest, and of Their Families.

Stiles is also happy to see a recent $40.5m allocation for cardiology research from the Tertiary Education Commission, which will have an equity focus.

Stuff

Read more from the original source:
Disease detectives are working to save families from heart-stopping conditions - Stuff.co.nz