The words hypertrophic cardiomyopathy would probably not mean much to many people, but the effects of the heart condition can be devastating and sudden.
And a Wymondham family can testify to how important it is that people learn more about hypertrophic cardiomyopathy, as five of them have the disease, which causes the heart to thicken, leading to heart rhythm and pumping problems.
Sarah Jane, a counsellor from The Lizard, has the condition, along with three of her children, her brother and her father.
Although the 56-year-old had problems exercising and walking uphill in her 40s, it was not until her daughter Cicely, then 17, collapsed in the gym in 2007 that she was diagnosed with cardiomyopathy.
As the condition runs in families, she was given an MRI scan which showed she also had it.
She has a biventricular pacemaker to help regulate her heart rhythm and improve its pumping power.
Tests on her other children, including Cicely's twin sister Bryony, at that time suggested they were unaffected.
However, when Cicely collapsed again while working in Newcastle, which resulted in her being fitted with an internal defibrillator, the other children were also diagnosed with hypertrophic cardiomyopathy.
These included Bryony, a recruitment consultant, her brother Sebastian, a 20-year-old psychology student, and Mrs Jane's dad Richard Horsfield, 80, a former fighter pilot, and brother Nicholas Horsfield, 50, a company manager.
A special information day will be held in Norwich on Saturday to enable people to find out more about hypertrophic cardiomyopathy.
And Mrs Jane is encouraging people to attend to find out more.
She added: 'Genetic testing can help identify family members at risk and ensure they get appropriate care. Cardiomyopathy is often unpredictable but it has inspired us to live a full life and appreciate the gift of life.
'We have got important advice from the Cardiomyopathy Association and are often on the charity's website.
'We have given information to our doctors so they understand the importance of taking symptoms seriously. Our medical care has helped reduce our fears and information from the Cardiomyopathy Association has dispelled some of the horrors we have found on the internet.
'I am attending the cardiomyopathy information day in Norwich to learn more about the disease, new developments in care and latest research. But I also want to know more about the surgery Cicely is to have so I can reassure her.'
For more information about cardiomyopathy, visit the Cardiomyopathy Association's website www.cardiomyopathy.org or call free phone 0800 0181 024.
How important is it to raise awareness of this condition? Email dominic.bareham@archant.co.uk.
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