It all started 10 years ago when I was diagnosed with fibromyalgia. A few years later I was also diagnosed with Crohn’s disease and peripheral spondyloarthritis. My problems started when I was in my early thirties, and like most people I (incorrectly) thought that only elderly people get joint problems so I did not visit a doctor. I thought that the symptoms would disappear and that the joint and muscle pain was due to my very active lifestyle. I used to take a lot of painkillers, but there came a point when I realized that my energy was deserting me, even at the start of my day, and I began to feel increasingly exhausted.
As I had two young children and a demanding job I decided to start investigating the cause of my disabling symptoms. The treating rheumatologist did not explain much to me. I was given a diagnosis of fibromyalgia and some anti-inflammatory and antidepressant pills. As a consequence, I started searching for information on the internet and decided to refer myself to the local patient group—The Cyprus League Against Rheumatism. There, with support from peers and various health professionals, I was empowered and discovered ways to accept and deal with my condition effectively.
From the moment of diagnosis, I started to educate myself in becoming a patient advocate. I attended a lot of conferences, training, and seminars, and I became a Patient Research Partner trained by EULAR (The European League Against Rheumatism). I had taken a 14 month online course and became a EUPATI Fellow (European Academy of Technology and Innovation) trained as a patient-expert on the research and development of medicinal products. Lastly but not least, after following the relevant training, I became a trainer for the ‘’self-management’’ of patients with chronic diseases.
As a patient expert and advocate I now work in several fields. These include participating in research initiatives with industry and academic institutions, revising lay summaries and grant applications for research projects, participating in revisions of treatment guidelines, presenting in various conferences and workshops and working with the EMA as an expert-patient on their list of collaborators. What I consider really important, and truly enjoying doing, is the self-management training that my organization, Cyprus League Against Rheumatism, offers to patients.
As part of my voluntary work, I have been the chair of AGORA (a platform Organization for people for Rheumatic diseases in Southern Europe) and I am currently the President of ENFA (European Network of Fibromyalgia Associations). Looking back today, after ten years of actively working as a patient-expert and advocate, I feel I have learned a lot and this knowledge has greatly helped my personal development. Most importantly though, I have learned that we patients need to be educated and empowered, to actively be involved in decisions that concern our treatment and wellbeing. Education enables us to act as equal partners in the decision making process, together with treating doctors and other healthcare professionals. We are the only experts in the “field” of living with a chronic disease, and together with medical experts, we can be partners in treatment.
I would argue that as patients we have an important role to play in supporting scientists and researchers. In our role as experts, we can help to identify the needs and gaps in current treatment options and thus support innovation. Apart from that, patient knowledge and expertise is vital to all stages of research, namely in setting the research question and in revising protocols (such as informed consent), questionnaires, and lay summaries, but also in the dissemination of results. In short, all stakeholders (researchers, industry professionals, academics, health professionals, regulators, patients) need to be part of the chain which leads to innovative and effective research and development of medicinal products.
Lets us all work together for the benefit of the patient!
Souzi Makri is the Vice President of The Cyprus League Against Rhuematism (CYPLAR) and has been active in patient advocacy for 10 years. You can find Souzi on Twitter @SouzMakri