In this instalment of the Real-World Series, we have a chat with Eden Byrne, a member of our IDEA-FAST Specialist Advisory Board. A 22-year-old from Belfast, Eden is studying Childhood and Youth Studies, whilst also balancing volunteering and her health conditions. Eden was diagnosed with Long COVID, and since then has been an avid participant in clinical trials and projects, and has advocated for a better understanding of young people’s experiences with chronic illness and fatigue. She also hosts her own podcast, Sports for All, on the Be the Change media network.
When did you get your diagnosis? What has the journey through therapy and disease management been like since then?
I got Long-COVID in March 2022, after experiencing a series of frightening symptoms like breathing difficulties, persistent coughing, and fatigue after a COVID infection. I had to learn to manage my symptoms on my own, without any medical help, since getting a diagnosis was a lengthy process. It took a year to get a diagnosis, after which I got re-infected and developed joint pain, rashes, and mobility issues. Getting COVID again exacerbated all my symptoms. A few months ago, I was also diagnosed with hypermobility syndrome and erythromelalgia.
All to say, I have been on a long journey with my health over the past few years. Although it has been intimidating at times, it is somehow reassuring to know that what I am experiencing is real and explainable. On the other hand, I am not left with a lot of treatment options, so there will be a lot of trial and error in learning how to manage my symptoms.
What are your preferred pastime activities? Have they changed since being diagnosed?
Before I got Long COVID, I was rather sporty. I had just earned my Taekwondo coaching qualifications and was on the path to university. Unfortunately, Taekwondo is physically demanding, and I have not been able to go back to it since I got my diagnosis. I also had to pause my University plans temporarily, but I am headed back to school this Fall; I will be attending an online University, which is better suited to my physical needs.
I have to be very careful with pacing and movement because of my fatigue and mobility limitations. While I am currently unable to do sports, I have found other ways to occupy my time. Since then, I have participated in a few research projects and have become involved with charities such as Versus Arthritis. Meeting other young people who are facing the same challenges as I have has been a great help.
Where do you find the most support?
Community has been the most important thing for me over the past few years. Participating in research projects has allowed me to share my experience and connect with people facing the same barriers I do. It sounds a bit cliché, but as young people, we tend to get overlooked quite a lot. Being in these spaces has given me so much support and courage to continue telling my story.
How did you hear about IDEA-FAST? Has it changed the way you handle your diagnosis, e.g., learning more about digital devices, your expectations about managing the disease?
I heard about IDEA-FAST through Versus Arthritis, and the project’s work immediately caught my interest. I decided to join the project to learn more and share my own lived experience. I am always interested in learning more about research to understand my condition better, and my involvement in IDEA-FAST so far has been very positive.
My involvement in the project has helped me learn a lot about the technologies being developed to manage fatigue in chronic conditions, and it has been interesting to see how IDEA-FAST fits in these efforts. I currently use a phone app to monitor my symptoms, which has been of great help in communication with my healthcare providers. I can share my symptoms with them more easily. I am looking forward to checking out some of the other tools being used in IDEA-FAST.
What improvements do you believe could be made to support patients with similar health conditions?
I am a big advocate of a more holistic approach towards chronic disease management. It would be great for physicians to be more aware of how these conditions impact all facets of our lives, as it can be difficult to explain all your symptoms. On a larger scale, it would be helpful if a research directory or database were available, where patients could see what research has been done for their condition and the results of these studies. Having this data accessible and searchable by patients would be an excellent way for them to stay informed about current developments in their condition.
How do you envision the potential impact of IDEA-FAST on patients in the future?
Research projects are not an immediate fix, but I feel great about the work that has been done in this project and the research that will be further done on the basis built by IDEA-FAST. I hope this project will provide a new generation of patients with the opportunity to understand their fatigue and better manage it. I am excited to have been a part of the journey.
Do you have any positive experiences, achievements, or personal growth you’ve experienced despite the challenges of your diagnosis?
At the beginning of last year, an article highlighting my and another young woman’s experience as young people with Long COVID was published in The Lancet, which was a huge honour. Since my diagnosis, I have also been interviewed often in the media and have received multiple volunteering awards.
Earlier this year, I launched my own podcast on disability and sports, hoping to encourage others, especially young people with mobility challenges, to get more involved in sports in any capacity. This was vital to me: doing sports is something I really miss, and it is great to give other young people in similar situations a space to share their experiences.
While my life over the past few years has not gone exactly according to plan, I have found purpose in new opportunities I never imagined. None of this would have been possible without the challenges I have faced since my diagnosis.