"I’ve known near enough my whole life that I have an inherited heart condition, Marfan Syndrome to be specific and at the same time for as long as I can remember I’ve also really wanted to use my experiences to either help others or the bigger cause in some way. I started a blog to discuss my experiences and ever since then I’ve been saying yes to as many opportunities as possible in relation to my condition.
This eventually led me to get involved with BHF when I found out that they were releasing some research that had been done to look into my condition. At the time I had no idea that they funded research into rarer conditions like mine so I jumped at the opportunity to get involved.
Research has personally always been important to me and this definitely drove me to get involved.
Since then I’ve been lucky enough to work with them a few times and most recently I’ve been involved in their new Patient Advisory Group. I remember being sent an email about it and thinking I had nothing to lose by applying to be involved and I’m so glad I did because it’s been a really insightful experience so far.
My role involves going through the clinical studies funding applications that BHF receive and assessing their Plain English Summaries and the levels of the patient and public involvement. We all have experiences of heart and circulatory diseases and our stories are all so different that we all really connect well to cover a wide range of conditions.
It may just be one part of the chain that the funding requests go through but we are definitely just as important as the other groups and roles.
At first I was pretty anxious as I’m the youngest member in the group (of 12) but my worries couldn’t have been more wrong as since the beginning it’s been only a positive and often educational experience. I’ve learnt a lot from assessing the funding requests and I’m glad that we have the opportunity as patients to put forward our thoughts based on experiences that the board above us, full of medical professionals and similar, don’t have.
My condition is rare and research opportunities don’t come around too often but when they do the importance of them is definitely realised by everyone involved. Research can bring a lot of hope to patients, even if it isn’t aiming to produce a cure, we really do rely on passionate doctors to take an interest in our conditions to be able to reduce our symptoms, manage our conditions and give us a better quality of life and care.
If I was given the choice again I’d definitely fill out that application form as I did once before, as I know I can use my knowledge and experiences to help improve a wide range of studies on many different conditions which overall has a much wider impact. Often you can make the biggest difference by getting involved in just the smallest of ways."
Read Shona's blog piece for BHF about living with an inherited heart condition
Last reviewed: June 2018