23 September 2025

Ahead of World Heart Day on 29 September 2025 - Amanda and Linda share their stories of care and how they are helping others as patient representatives with the KHP Cardiovascular & Respiratory Partnership.

Amanda’s story 

Everything in my health worsened around puberty when I was 10 years old. Fainting, palpitations, angina pain was my normal for years. I underwent testing as my blood sugar was low (I wasn't diabetic, but Mum was Type 1) and I endured really horrible tests as a teenager. This put me off seeking any more help and I just tried to cope.  

In my twenties my loving partner helped me go to the cardiologist seeking a referral. I was sporty and ate healthily, didn't smoke or drink - but did have endometriosis diagnosed later (2008, 18 years later) which causes systemic, inflammatory problems to this day (after hysterectomy). 

The first cardiac investigations showed an inverted T-wave in my ECG but I didn’t receive my diagnosis at that point. After a second opinion was sought, a wonderful cardiologist took me on and during an angiogram my coronary artery spasmed and I had my diagnosis 'Coronary Artery Spasm'. Since then (2004) I have been taking diltiazem daily and my heart problem is controlled. 

It was a similar experience when my symptoms for Relapsing Polychondritis started. My GP listened to me when I was discharged from rheumatology with anxiety after many tests. I was welcomed as a referral at Guy's Hospital and immediately was listened to and diagnosed. Since then I have been a patient navigating my treatment with my fantastic rheumatologist. When my breathing became affected by the disease (Tracheobronchomalacia) I started treatment with the Lane Fox Unit at St Thomas' Hospital. 

My Multi-Disciplinary team are there for me every step of the way and have changed my quality of life. The personalised, holistic approach gives me the treatment I need and faith and hope in the NHS. 

Having complex, rare and chronic disease is difficult. There is much to navigate in society being disabled as well as medically. There are frequent times even now, with diagnosis, I am told I have anxiety. Really, I am quite chill, believe in living in the present and helping others. This attitude has led me to fight for patients and I work collaboratively and respectfully with many health professionals improving our inclusivity and patient voice from lived experiences (both mine and others). 

As a high achiever I was offered work I had to turn down due to endometriosis then more illness. So I adapt to what I can do as my body dictates. This is an example of how disease affects you as a person. Health and career changes can cause you to go through the grief process, it's not just death which causes grief. I have learned to go with the difficult feelings and seek the acceptance as challenges and change occur. 

Patient and public involvement is a rewarding area of work and representation for me. Training as a Peer Leader with the NHS, writing books, and reaching out to the community has enabled me to continue to use my skills and participate as a disabled person. Working remotely means I work across the UK and internationally - and also connect, network and share appropriate academic public papers between different research groups and panels. It means I can pace myself and look after my health needs, manage my pain, work (like now) when I am coping with nasty infections. 

To someone going through a similar diagnosis journey I would say please listen to your body. Don't give up if you know something isn't right. Yes, anxiety exists, but women have been subject to this for hundreds of years from the hysteria era. My physical pain and symptoms weren't all in my head. You will get there. Now there are so many support options for you. Above all I believe in attending every appointment with an open mind, asking for respect when you need to and joining patient groups so we can all work together. 

Linda’s story  

My daughter was born on a Friday, nearly 20 years ago, in a south west London hospital. The registrar noticed the femoral pulses in her legs were weak. Two days later she was on the operating table at the Royal Brompton having open heart surgery. 

She was diagnosed with a complex disease involving coarctation of the aorta and ventricular septal defect. At the age of three, she had to be admitted for open heart surgery for a second time.  
 
With her congenital heart condition came other complications that required a whole host of other treatments and therapies, including tube feeding, nutrition advice, physiotherapy and speech and language. 

Alongside all the many appointments were all the daily exercises. She missed a lot of school, as she struggled to keep up. By early teens she had to be home educated. 

 It’s been a long, long journey but today she’s now a wonderful vibrant young adult full of dreams and ambitions. Her challenges have helped shaped the way she is, making her stronger and more determined to make the most of her life.  

For the past five years I’ve been a carer representative of various PPI groups: from the Royal Brompton Hospital’s former Children’s Oversight Group, the Evelina London Children's Hospital expansion and currently the Heart and Lung Patient Carer Advisory Group.  I feel my voice is being heard. My daughter, as a teen patient representative, even got to take part in a youth PPI workshop, giving her views on the interior design of Evelina London Children's Hospital. 
 
My daughter’s medical team saved her life twice, and has always provided first class treatment. I feel they have been there for her every step of the way, and will continue to be there for her, for many years to come, for which we, as a family, are eternally grateful.  
 
It was important that despite all the challenges, as a mother, I followed my own instincts and never stopped believing in my child. Whilst it has been far from easy, at times overwhelming, the best rewards in life I’ve found are generally the toughest! Milestones were not reached when expected, but my daughter has eventually reached them in her own time, and in her own way.  

Find out more about the work of the KHP Cardiovascular & Respiratory Partnership.