Kiian farewells his hair for cardiac research
16 Jun 2017
Kiian Ratten is 9 years old and has always been known as the kid with the hair!
His father Daniel was recently diagnosed with Long QT Syndrome, a genetic heart condition that is treatable, but can result in in sudden fainting, seizures or even sudden death if it is undetected.
Kiian, from Perth Western Australia, undertook research on the internet to learn more about his dad’s illness and came across the cardiac research being undertaken through the Clifford Craig Foundation into genetic heart disease.
Having a strong interest in science at his young age and wanting to help research of Long QT Syndrome, Kiian decided to raise funds by offering to sacrifice his beloved blonde curly locks if his fundraising goal of $700 was achieved. Not only did he reach his goal in very short time, but his fundraising donors contributed a whopping $1,368 in just over a week.
So, with his target achieved, he headed off to the hairdresser with his mum to meet his destiny with the scissors.
A great effort Kiian. A wonderful and thoughtful initiative by a young person who already wants to help others.
About Long QT Syndrome
Long QT syndrome (LQTS) is a heart rhythm condition that can potentially cause fast, chaotic heartbeats. These rapid heartbeats might trigger a sudden fainting spell or seizure. In some cases, the heart can beat erratically for so long that it causes sudden death.
You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, certain medications and medical conditions might cause long QT syndrome.
Long QT syndrome is treatable. You might need to take medications to prevent a chaotic heart rhythm. In some cases, treatment for long QT syndrome involves surgery or an implantable device. You’ll also need to avoid medications known to cause prolonged QT intervals that could trigger your long QT syndrome. Sometimes, certain physical activities or sports may need to be avoided.
Clifford Craig Foundation’s Research
A current focus of Clifford Craig funded research into genetic heart disease is the development of the Genetic Heart Registry for Tasmania, in association with the Australian Genetic Heart Disease Registry.
This is an on-going research study that aims to identify every Australian family that has an inherited heart disease. This will enable identification of carriers with genetic heart disease who are at risk of heart failure and sudden death. The benefits of the registry will multiply as direct relatives of people with an inherited heart disease have a 1 in 2 chance of inheriting the same genetic condition.
Launceston cardiologist, Associate Professor Don McTaggart, who is also Chairman of the Clifford Craig Foundation, is heading the local development of the registry, which will help researchers shed new light on genetic heart disease in Australia to help improve diagnosis, prevention and treatment options.
What conditions are included?
While all types of heart disease are important, the Registry is specifically for genetic or inherited heart disease. This includes:
Inherited cardiomyopathies, such as:
- Hypertrophic cardiomyopathy (HCM)
- Familial dilated cardiomyopathy (FDC)
- Arrhythmogenic right ventricular cardiomyopathy (ARVC)
- Familial restrictive cardiomyopathy
Inherited electrical disorders, such as:
- Long QT syndrome (LQTS)
- Catecholaminergic polymorphic ventricular tachycardia (CPVT)
- Brugada syndrome
The Registry also includes a few other conditions but it must be a genetic or inherited heart disease. Please email firstname.lastname@example.org if you’d like to find out if you’re eligible for the Registry.
You are eligible to enrol if you are (a) diagnosed with an inherited heart disease or (b) a first-degree relative of someone with an inherited heart disease, this includes Parents, Brothers and sisters, Sons and daughters.