The ‘SPARE’ project, Axial Spondyloarthritis: the account of experiences

Non-radiographic ankylosing spondylitis (AS) (Nr-axSpA) is a form of inflammatory arthritis affecting the spine. The damage it causes is not visible on X-rays. If not diagnosed in specific settings by experienced specialists, it can be mistaken for mechanical low back pain. Not only that, peripheral manifestations of inflammation are often interpreted as joint or tendon problems. According to the Guidelines “for the diagnosis and therapy of Spondyloarthritis”, an average time of 8.5 years elapses between the onset of symptoms and the diagnosis of SA.
In Italy, according to APMARR (Associazione Nazionale Persone con Malattie Reumatologiche e Rare – National Association of People with Rheumatologic and Rare Diseases), there are about 600,000 people with this disease; however, it is little known by people and above all little recognised in society.

Living with the experience of ankylosing spondylitis, understanding the experience, the needs that can really be met, the lifestyle, the treatment options, the care pathways undertaken, makes it possible to contribute to “disease awareness” about this condition, which is highly impactful.

This is where narrative medicine comes into play, as a therapeutic tool that enables the value of the patient to be recovered as a person with a disease or chronic condition that has changed the course of his or her life.
Going beyond the idea of the disease as a simple pathological condition, or disease, narrative medicine focuses on the continuum that links the disease to the person, grasping the evolution towards a holistic concept in which the disease is an integral part of the patient’s experience, in that convergence of symptoms, emotions and expectations often identified with the term illness.

Thus was born the project SPARE, SPondiloartrite Assiale: il Racconto delle Esperienze, which collects some narratives of people with non-radiographic Axial Spondyloarthritis and their caregivers.

The project was carried out between July 2020 and November 2021 through the involvement of Rheumatology professionals from Rheumatology centres experienced in the care of people with non-radiographic Axial Spondyloarthritis.

The project and the volume were carried out by the ISTUD Health and Care Area in the persons of Luigi Reale and Maria Giulia Marini. We would like to thank Novartis for promoting and supporting the SPARE project, in the person of Marcello Salis. We would like to thank the associations ANMAR (Associazione Nazionale Malati Reumatici ONLUS) and APMARR (Associazione Nazionale Persone con Malattie Reumatologiche e Rare) who have actively contributed to the diffusion of the narrative tools, allowing people with spondyloarthritis to tell their stories.

In the SPARE study it emerged that 67% of the patients’ narratives declared difficulty in moving around, 50% in having a social life and having to resort to strategies of avoiding friends and acquaintances. The metaphors describing the illness in 40% speak of body insidiousness and in 40% of body rigidity to the extreme of prison.
These are facts that go beyond fiction and therefore a great operation of recognition of the pain brought and suffered by these people who have told their stories is necessary.

It is interesting to note the astonishment that emerges in the narratives of the health professionals when faced with the lack of recognition and trust in the words of the patients by their own colleagues: the feeling of having wasted time in setting up appropriate care is present, with a sense of mutual regret between patients and doctors.
A place of safety, a safe listening space is provided by the Patients’ Associations, which are needed in all their activities, in this case precisely to educate, inform and raise awareness about the existence of this condition and what it means to live with non-radiographic axial spondyloarthritis.

In looking to the future, one half of the patients’ narratives don’t want to see it or are afraid of it, while another half look to tomorrow with optimism for new treatments: while new treatments are there and are becoming more and more effective, we try to remove the fear or unwillingness to raise our heads and look forward through greater recognition of Ankylosing Axial Spondyloarthritis.

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