Maddy's story

14th May 2018

Maddy Orford was just 18 when she diagnosed with dilated cardiomyopathy and severe heart failure in November 2016.

A fit and healthy young woman who regularly played football and enjoyed exercise, Maddy had a real zest for life. At the time she first became unwell she was busy visiting prospective universities and had ambitions to become a forensic scientist in the future.

Maddy's diagnosis was sudden, and so was her deterioration in health. In the nine short months after she was diagnosed she had two heart transplants that sadly failed, and she tragically died of dilated cardiomyopathy in August 2017.

Her family were left heartbroken, but are determined to raise awareness of cardiomyopathy and are working with us to make more people aware of the signs and symptoms of the condition.

A memorial page has been set up in Maddy’s memory :

Typical symptoms of dilated cardiomyopathy include:

  • Breathlessness (or dyspnoea) – fluid builds-up in the lungs, making it harder to breathe.
  • Swollen legs, ankles and tummy – build-up of fluid in the tissues, because the heart isn’t pumping effectively, can cause swelling (called ‘oedema’).
  • Fatigue (tiredness) – as the heart’s function is reduced, less energy is delivered to the tissues, causes excessive tiredness.
  • Palpitations (feeling your heart beating too fast, too hard or like it is ‘fluttering’) – this is caused by arrhythmias (when the electrical messages which control the heart’s rhythm are disrupted). 
  • Chest pain – caused by reduced oxygen levels getting to the heart.
  • Mitral regurgitation – a small amount of blood leaks back through the mitral valve when the left ventricle contracts (instead of flowing through the aorta out of the heart). This is caused by the mitral valve not closing tightly shut when the ventricle contracts. When the blood flows in the wrong direction it can be heard through a stethoscope, and is referred to as a heart murmur.

Find out more about dilated cardiomyopathy and the support resources we have available