A 20-year-old Lancaster student with heart disease has been speaking up for patients at a Parliamentary reception on heart failure.
Jenny Rees, who is studying psychology at Lancaster University, was among a group of heart patients who told MPs and senior members of the Department of Health about the difficult issues facing people with heart disease.
Jenny was diagnosed with dilated cardiomyopathy when she was six weeks old.
The condition, which affects people of all ages, causes the heart to enlarge and pump less efficiently.
When she was 16 Jenny was given a pacemaker but two years later, because doctors feared she was at risk of a cardiac arrest, an internal defibrillator was fitted.
The meeting was held at the Palace of Westminster.
It was hosted by heart failure charity the Pumping Marvellous Foundation and the Cardiomyopathy Association, a charity that provides information and support to families affected by the inherited heart disease.
Jenny, a volunteer for the Cardiomyopathy Association, spoke about the battles she has faced as a young person living with heart disease.
She said: “When you get a diagnosis of heart failure as a young person, it poses an entirely different set of difficulties and anxieties to those experienced by people who are much older.
“I have struggled physically and emotionally not being able to do the things I enjoy (such as running and theme park rides) and my medication makes me very tired.
“This proved to be a huge hurdle when studying and taking exams. I worry about whether I will get a job I want, and living independently away from home at university has been more demanding.
“Thanks to some excellent care and great support from my family, friends and the Cardiomyopathy Association, I have managed to live a pretty full life but not everyone with my condition gets these opportunities.”
Jenny has been trying to help others since she was 17 and joined the Cardiomyopathy Association’s network of volunteers who provide support to others by telephone and email.
She said: “I joined the network specifically to help young people because my family and I had found it difficult to find other affected young people to talk to.
“However, through my volunteering I have gained in confidence and have learnt new skills. I now know I want to work with children who have special educational needs.”
As well as giving a talk, Jenny was also able to speak privately to MPs and health officials about the many needs of heart failure patients and the difficulties some have getting access to the help they need.
She said: “Having heart failure means your heart cannot pump sufficient blood to meet the body’s needs. It makes it difficult for people to work and carry out basic daily activities.
“This reception was held to discuss the clinical and psychological impact heart disease has on patients and their families and the lack of care available in contrast to diseases like cancer.”