"It’s very exciting to see more evidence being built around a condition that you live with."
For so long, Sarah Brown struggled to get an acceptance of her condition.
Her complaints of chest pain, numbness in the arms and headaches fell largely on deaf ears in the clinical community.
“My doctors told me I couldn’t possibly have a heart condition because I would get the chest pains and tightness while I was resting, not exercising,” said Sarah. “I was living with pain every day but was being told there was nothing wrong with me.”
That finally changed in 2012 when a consultant based at Barnet Hospital, part of The Royal Free NHS Foundation Trust, gave her an initial diagnosis of vasospastic angina based on her symptoms alone.
Vasospastic angina develops when a coronary artery supplying blood and oxygen to the heart goes into spasm and suddenly narrows. This causes the chest pain and people living with the condition can also experience headaches and some also experience numbness and nausea.
Patients living with the under-diagnosed condition are also more likely to suffer heart failure and heart attacks.
Sarah’s diagnosis was confirmed in 2014 by angiogram, a special type of x-ray which uses contrast dye to allow your doctor to look at the coronary arteries (the blood vessels that supply the heart).
By then, the condition had forced Sarah to give up her cherished 30-year career as a midwife. But her diagnosis gave her something new to focus on – research, or rather the lack of it.
“After I was diagnosed, I asked my consultant how much they knew about my condition and he replied, ‘Not much!’
“Doing research into my condition helped me cope with my pain and that’s why I’m so passionate about it now, because it helps me cope better.”
Sarah has since thrown herself into the world of research. She sat as a lay member on the British Heart Foundation’s clinical studies committee for a three-year tenure from 2016 to 2019, advising research applicants on how to involve patients and the public in their research projects.
“I’m very much about patient and public involvement,” Sarah explained. “It should not be an afterthought; it should be the first thought.”
Thankfully, there is now more research into Sarah’s condition. She has advised Professor Colin Berry, of the University of Glasgow, on patient and public involvement aspects of his work and also reviewed some of the research documents for Professor Divaka Perera’s research into dysfunction in the small blood vessels in the heart, supported by NIHR Guy's and St. Thomas' Biomedical Research Centre. Professor Perera is based at St Thomas’s Hospital in London, part of Guy’s and St Thomas’ NHS Foundation Trust.
She is also a Research Champion for CRN North Thames. Research Champions volunteer their time to help spread the word about health and care research to patients and the public, and especially those groups who are currently less likely to take part in research. They also help research and healthcare staff understand more about the experiences of those who take part in research.
Sarah explained: “Research has given me acceptance. Acceptance that my condition exists and acceptance of how to cope with it. There’s also more acceptance amongst the clinical community and more research into it. It’s very exciting to see more evidence being built around a condition that you live with.”
Interested in becoming a Research Champion? Visit the Research Champions page on NIHR’s website.
To find out more about research studies taking place in your area, go to the Be Part of Research website.
