In this instalment of the Real-World Series, we have a chat with Nancy Brown, a member of our IDEA-FAST Specialist Advisory Board. Nancy was diagnosed with Rheumatoid Arthritis almost 20 years ago, and since then has been a fierce advocate and avid participant in clinical trials and projects.
When did you get your diagnosis? What has the journey through therapy and disease management been like since then?
I got my diagnosis almost 20 years ago, at 16. I had been in and out of doctors’ offices for a few years due to pain flare-ups all over my body. The diagnosis was quite unexpected, but also a great relief to know I was not imagining my pain.
As any 16-year-old, I did not take the arthritis seriously – I did not change any of my habits or start looking after myself more. Over the years, I also developed allergic reactions to a bunch of medications, after which I started keeping track of my treatment. I was feeling the impact of extreme fatigue and the pain all over my body, but I kept pushing through. Eventually, in my early twenties, I had a bad bout of Rheumatoid Arthritis: all my medications stopped working, and I was bedridden for months. Since then, I have taken my health and diagnosis very seriously.
I always got a lot of support from my family and some friends who also have immune-mediated conditions, but I only sought external support a couple of years ago, when I was also diagnosed with Fibromyalgia. I started getting involved in charity work and support groups, and it has been extremely fulfilling. I get the most amazing advice from people who have lived with the same condition as I for many years. Getting involved makes the disease feel less isolating.
What are your preferred pastime activities? Have they changed since being diagnosed?
As a young girl, I was sporty and particularly loved gymnastics. When I started getting joint pain, especially in my hands, I found it to be very physically limiting. As the arthritis progresses and the pain spreads to different places, physically intensive hobbies are not suitable anymore. But, over the years, I have learned that the most important thing is to constantly adapt. While I do not do gymnastics now, I enjoy reading and swimming as often as I can. If I am feeling well enough, I also try to walk in nature as much as possible.
How did you hear about IDEA-FAST? Has it changed the way you handle your diagnosis?
I got involved with IDEA-FAST through Versus Arthritis. Initially, I contacted them for support during my most recent bad bout of arthritis a couple of years ago; my medication wasn’t working, and I had some time off work, so I just wanted to see what options were available for me. They invited me to become a research partner, and IDEA-FAST was one of the projects that came up. Since fatigue had been such a big burden on my life for quite a few years, I wanted to get involved, and I have been involved in the capacity of patient advisor since. Since I became part of IDEA-FAST, I have learned loads about the complexity of fatigue. It has encouraged me to speak more about my experience.
What improvements do you believe could be made to support patients with similar health conditions?
As a part of my job, I often review projects and always pay attention to how involved the patients are. It’s important that patients and representatives are considered from the beginning stages of a project, not just included as an afterthought. Involving them in every step and ensuring a clear line of communication between them and the researchers is critical. IDEA-FAST does a great job in this aspect. It can be quite daunting to voice your opinion in front of a cohort of scientists, but our perspective was heard and included throughout the entire project.
How do you envision the potential impact of IDEA-FAST on patients in the future?
Before I got diagnosed, I found it quite difficult to get clinicians to take my fatigue seriously. Fortunately, now that my Rheumatoid Arthritis has been diagnosed, the situation has changed, although we still have no objective measure of fatigue. I believe IDEA-FAST can play an important part in the perception of fatigue in patients and in dispelling misconceptions about it; if not today, for future patients.
Do you have any positive experiences, achievements, or personal growth you’ve experienced despite the challenges of your diagnosis?
I’ve always wanted to travel but felt that Arthritis was holding me back a lot, especially since I was diagnosed very young. By getting involved in projects like IDEA-FAST, I got the opportunity to travel and meet many interesting people whom I wouldn’t have met otherwise. In many ways, I owe these experiences to my Rheumatoid Arthritis.
