“A Soul in Struggle” is a bold, tender project that uses the language of art to open a new conversation about scleroderma — a rare, chronic autoimmune disease that can profoundly affect daily life. Presented by the World Scleroderma Foundation and directed by Jimmy Cutrino, the documentary interweaves the lives and works of Leonardo da Vinci, Michelangelo, Renoir and Paul Klee with the testimonies of people who live with scleroderma today. The result is a film that aims to move audiences beyond medical facts and statistics to a deeper, more human understanding.
Why art? A delicate bridge to difficult realities
The filmmakers deliberately chose some of history’s most resonant artists because their lives and work offer powerful metaphors for illness, creativity and resilience. Renoir continued to paint despite severe rheumatoid arthritis; Paul Klee’s late works were shaped by a disease now thought to be systemic sclerosis. Even where retrospective medical diagnoses of figures like Leonardo and Michelangelo are speculative, their stories help viewers reflect on the relationship between the body, limitation and expressive life.
Using art as a vehicle is not about romanticising suffering or claiming that illness breeds genius. Rather, it creates an access point: masterpieces act as a sensitive “translator,” helping audiences feel the lived experience that clinical language alone struggles to convey. This approach allows the film to hold the complexity of patients’ lives — pain, fatigue, loss of function — while preserving their dignity and full humanity.
Voices at the centre: testimony, not spectacle
At the heart of the film are the voices of people with scleroderma. During a Milan presentation, Antonia’s testimony stood out: she shared the shock of diagnosis, the long learning curve to understand treatments, and the daily adaptations required to live with the disease. Her message was clear and quietly powerful: scleroderma does not erase the person. She insisted on keeping projects, love and moments of lightness in her life, despite the disease’s burdens.
Antonia’s story underscores a vital point: patient testimony reveals needs and fears that medical reports often overlook. Listening to patients is essential to design better support systems — from quicker diagnosis to integrated care pathways involving rheumatologists, pulmonologists and gastroenterologists.
Understanding scleroderma: more than skin deep
Scleroderma, or systemic sclerosis, is an autoimmune condition characterised by microvascular changes, immune dysfunction and excess fibrous tissue formation. It can present with skin thickening and finger stiffness, but its reach often extends to internal organs — particularly the lungs (interstitial lung disease, pulmonary hypertension), the heart and the digestive tract. The course of the disease is highly variable: some people have limited, manageable symptoms, while others face progressive, serious complications.
One common early sign to watch for is Raynaud’s phenomenon: color changes in the fingers in response to cold or stress — pale, then blue, then red — often accompanied by finger swelling. While Raynaud’s alone does not equal scleroderma, when it appears with persistent swelling or other symptoms it should prompt medical evaluation, including capillaroscopy and autoantibody testing. Early diagnosis matters: intervening sooner can slow progression and protect organs.
Delays in diagnosis and the need for awareness
Sadly, diagnostic delays remain long in many regions. Experts highlight that in some countries it still takes five to seven years on average from first symptoms to a confirmed diagnosis — a gap that can have tangible consequences for outcomes. The World Scleroderma Foundation is working to shorten this timeline by educating general practitioners, improving referral pathways to specialist centres and promoting simple screening tools that can speed up recognition.
Research, care and the patient journey
“A Soul in Struggle” situates individual stories alongside scientific voices to show the interplay between research progress and lived needs. Professor Marco Matucci‑Cerinic — president of the Foundation and a leading rheumatologist — emphasises that modern care is about more than medication. It’s about multidisciplinary management: monitoring lung function, screening for cardiac involvement, managing digestive symptoms, rehabilitating hand function and addressing chronic pain and fatigue. Psychological support and social services are also essential, because scleroderma affects work, relationships and quality of life.
The film’s use of technology and narrative innovation
The documentary includes imaginative elements: AI‑generated voice reconstructions give the historical artists a speaking presence, creating a poetic dialogue across centuries. These reconstructions are explicitly narrative devices rather than historical testimony; they serve to link art and contemporary patient stories emotionally. The filmmakers made a conscious choice to keep technology subordinate to the real voices of patients — the human testimonies remain the film’s moral centre.
Why the film matters for our community
“A Soul in Struggle” will be presented in Venice on October 17th as part of an event to raise awareness and funds for the World Scleroderma Foundation. For readers of Princess‑Daisy, the film is a reminder that empathy and knowledge go hand in hand: learning to recognise early signs, supporting research and listening to those affected are small but vital steps that can transform lives.
