Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease
A diagnosis with a rare disease can upend the lives of families, taking them in a direction they never expected, into new and unknown territory. The Greek film Rare Land, which premiered in Rome on 29 November 2022, explores some of the issues people with rare disease encounter
Rare Land: synopsis
For Alexandros, a young boy living in a remote seaside village in Greece, his journey with a rare disease begins when he suddenly falls into the sea. The dizziness that caused it becomes more frequent, but to his parents’ frustration, no local doctor can tell them what’s wrong.
Finally, an American doctor diagnoses him with the rare disease alpha mannosidosis. The family are devastated by this news, but their hopes are lifted when they learn an innovative treatment could be available. Unfortunately, its cost puts it out of their reach. Meanwhile, as Alexandros’s condition deteriorates and his motor functions fade, his mother’s frustration at her inability to care for him grows.
“Alpha mannosidosis deficiency is a metabolic disease belonging to the group of lysosomal storage diseases. It is an inherited ‘recessive’ disease… The disease is very rare, and its incidence is less than 1 case per 100,000 to 500,000 live births.”
“At birth, children generally appear normal… Later in life, patients begin to manifest the characteristic alterations of the disease with the development of abnormalities in the skeletal system… central nervous system… motor disorders, the progressive appearance of facial dysmorphisms… recurrent infections up to immunodeficiency status. Deafness associated with a speech delay is typical of the disease.”
– Dr Carlo Dionisi-Vici: head of the division of metabolic diseases, department of paediatric medicine, Bambino Gesù Children’s Research Hospital, Rome, Italy.
Acceptance: a key theme in Rare Land
The screenwriter, Nancy Spetsioti, describes the film as a “journey of truth, introspection, acceptance and love”. As somebody with a mobility disability, she was particularly interested by Alexandros’s mother’s struggle to accept her son’s illness.
Nancy believes that the film’s foregrounding of the theme of acceptance is important and that there needs to be much more acceptance of disability in society.
“Disability is a social construct. It is the barriers that society puts up against people who stray from the social norm of able-bodiedness… We want to illuminate acceptance.”Nancy Spetsioti
The inspiration for the film and the hopes for it
The idea for the film came from Stavros Theodorakis, the president and managing director of Chiesi Hellas S.A. He was inspired by the story of the first person diagnosed with alpha mannosidosis in Greece, who struggled to access treatment. As Giacomo Chiesi, head of global rare diseases at Chiesi says, “not one single person should be left behind” as treatments progress.
Dr Carlo Dionisi-Vici, who is head of the division of metabolic diseases at Bambino Gesù Children’s Research Hospital, hopes the film will raise awareness of alpha mannosidosis. “Early diagnosis is the best way for improving prognosis in all treatable diseases,” he says.
“The visual arts… represent an extraordinary vehicle for spreading knowledge about areas of medicine that are too often neglected because of their complexity but instead deserve great attention because of the continuing developments in scientific research and the positive impact on patients.”Dr Carlo Dionisi-Vici
Chiesi is submitting Rare Land to film festivals worldwide. At Rare Revolution, we hope it will be well received and will help to raise awareness around alpha mannosidosis and rare diseases, and their impact on people’s lives.