BBC Watchdaog Healthcheck

Falklands veteran John Ellis and his daughter Faith were both fit and healthy until they suffered sudden health crises.

John's was 11 years ago, as he told Watchdog Healthcheck: "I felt like I got a little bit of a flu bug and that night I just couldn't breathe. Then probably two days later they actually came and said I have got cardiomyopathy and that my heart was massively enlarged and that the only cure for it was a heart transplant. Literally from being very fit to actually being in a bed on life support took 48 hours."

Faith had no health problems until after the birth of her son Brandon a year ago: "I was throwing up all the time, couldn't get water down. I was at my mum and dad's house and I just collapsed. The next minute I knew, I was in hospital at the Bradford Royal Infirmary. They told my dad that it was something to do with my heart and they suspected that it could be the same heart disease that he'd got."

Faith was shocked to be told that, like her Dad, she too needed a heart transplant and was also suffering from cardiomyopathy, a largely hereditary condition in which the heart muscle can become enlarged and fail. Now the Ellis family know all about cardiomyopathy. John's mother has it and his aunt died from it two years ago and one first cousin has had two heart transplants, but that is not all. As John told the programme: "There have been approximately nine fatalities in the family all down to hereditary heart disease, cardiomyopathy, and there are up to fifteen in total that are suffering, or have suffered from cardiomyopathy."

Cardiomyopathy is often misdiagnosed or simply not noticed at all. It can strike apparently very fit people. Like 17 year old amateur boxer, John Tiernan.

June Boulton, told the programme: "He knew he wasn't well, he'd said a couple of nights before he went over to my daughters that he felt strange. But he couldn't exactly say what the problem was, he just said that he would go to the hospital on the Sunday when he come from me daughters and get checked out."

John collapsed and died before going to hospital, the coroner could not find a cause of death. That was not good enough for John's mother, she suspects he died of cardiomyopathy. She has researched the subject, and now knows she too has the disease:
"I thought maybe that is what John died of because someone can't die of nothing. There is no-one who has informed me that it is hereditary, not the coroner, not the doctor, no-one. There is no information anywhere."

" About 120,000 people in the UK have cardiomyopathy and no disease is responsible for more sudden deaths in the under 25's. "

About 120,000 people in the UK have cardiomyopathy and no disease is responsible for more sudden deaths in the under 25's. The Cardiomyopathy Association (CMA), say cardiomyopathy kills four young people every week, but with screening, treatment is possible and patients can lead relatively normal lives.

Gordon Rae of the Cardiomyopathy Association, told the programme: "What is happening is that affected families are not being told that all first degree relatives brothers, sisters, aunts and uncles should be tested and screened to see if they have the gene. This is not happening and this where the anguish lies with many families because sometimes they lose two and three children before it is recognised that the condition is inherited."

Mathew Jones is being tested for cardiomyopathy, his father's sudden death last year may have been caused by the disease. So his mother brought him to St. George’s Hospital in London for a series of simple tests. She's paid £750 to avoid joining an NHS waiting list. St George’s Hospital evaluates thousands of anxious patients every year.

Professor McKenna, a Professor of Cardiac Medicine at St George’s Hospital, told the programme: "At least on a weekly basis we see families or situations where symptoms have been present obvious warning signs have been present but they have been ignored. Most of them have carried the diagnosis asthma. I could go on with endless examples like this where there have been deaths and it takes the second or third or fourth young death in a family before somebody asks the question: ‘Is there something inherited? Is there a problem here? Shouldn't people be evaluated?’"

Matthew was found not to have cardiomyopathy, As Professor McKenna explained: "For practical purposes you should consider yourself as not having the condition and you are very, very unlikely to carry the diseased gene and that means that it terms of children the one you have and maybe future ones that they are not, they are unlikely to be at risk. So it is good news."

Doctors have recently tested baby Brandon Ellis. Doctors say he has a high risk of developing cardiomyopathy. At least he will be regularly screened, which his mother wasn't after her father's transplant. So Brandon may not need a new heart, his mother Faith Ellis told Watchdog Healthcheck: "When I look at him I just hope he doesn't get the same as what we've had cause I couldn't watch him going through it after having seen my dad go through it and been through it myself."