Characters with Rare Diseases in the movies

We take a look at 5 films to do our bit in the fight to make rare diseases more visible. Film can be a powerful tool to raise awareness of certain pathologies considered very rare and therefore rare in standard medical practice. However, these diseases constitute a serious health and social problem. Cinema, as an informative element, can be a good resource that could help to make these pathologies visible. Perhaps if we make them more visible, if we manage to give them more of a voice, we can ensure that more resources are allocated to their research, thus helping a great many patients and their families.


Movies about rare diseases


Película Despertares sobre enfermedades raras

Rare diseases > Encephalitis lethargica

Film > AWAKENINGS (1990)

In 1969, Dr. Malcolm Sayer (Robin Williams) gets a job in a New York hospital to treat a group of patients in an irreversible vegetative state. These patients, survivors of the outbreak of lethargic encephalitis that affected the population between 1917 and 1928, live in a catatonic state.

After studying the effects of a drug (L-dopa), Dr Sayer decides to administer it to his patients. Sayer witnesses the sudden and astonishing “awakening” that the patients begin to experience. Especially one of them, Leonard Lowe, played masterfully by Robert de Niro.

The film is based on the autobiographical work by neurologist Oliver Sacks, also entitled Awakenings, published in 1973. Encephalitis lethargica, also known as epidemic encephalitis or sleeping sickness or Von Economo’s disease, is a pathology that can leave patients with generalised paralysis. Individuals become rigid, trapped in an immobile but conscious body.

Beyond the wonderful performances, the film depicts the perseverance of the doctor, giving his life to his patients in search of a possible cure. It portrays the doctor-patient relationship very well and gives us a glimpse of a real story, the suffering of all these patients and their families. It shows the individual and their pain, their experience of the disease, their fears and joys when they “wake up” and their great sadness when they return to their previous state.


Película LORENZO´S OIL sobre enfermedades raras

Rare diseases > Adrenoleukodystrophy

Film > LORENZO’S OIL (1992)

Here is another example of how a film can help us to make a pathology visible. The film also shows the suffering that a disease can cause not only to patients but also to their families.

The film, based on true events, tells the story of Lorenzo Odone, a 5-year-old boy who develops a rare disease for which there is no treatment: adrenoleukodystrophy. His parents(played by Nick Nolte and Susan Sarandon) are not resigned and in desperation begin to investigate and fight to try to find a remedy for their son’s strange illness.

Directed by George Miller, the film received 2 Oscar nominations: Best Actress (Susan Sarandon) and Best Original Screenplay.

Adrenoleukodystrophy is a hereditary pathology that causes neurological degeneration that can lead to a vegetative state and eventually to the patient’s death.


Película El hombre elefante enfermedades raras

Rare diseases > Proteus Syndrome

Film > THE ELEPHANT MAN (David Lynch, 1980)

Late 19th century. Joseph Merrick (John Hurt) is a monstrously deformed man who lives in a circus. Because of his appearance he is exhibited every day as a fairground attraction, suffering and being humiliated continuously. Everything changes when he is discovered by the young surgeon Frederick Treves (Anthony Hopkins).

Joseph Merrick’s most likely diagnosis is a severe form of Proteus syndrome. This is a congenital disease that causes abnormal development of muscle, bone, fatty tissue, blood and lymphatic vessels, as well as an overgrowth of the skin that can lead to the development of tumours throughout the body. Described in 1979, only about 200 cases have been confirmed worldwide. The syndrome is named after the Greek god Proteus who could change shape.

The film was nominated for 7 Oscars including Best Actor, Best Picture and Best Director. As a curiosity, the make-up was so demanding in this film that the Academy had to create this category the following year.


Película Wonder enfermedades raras

Rare diseases > Treacher Collins Syndrome

Film > WONDER (Stephen Chbosky 2017)

This is one of the rare disease movies that helps to raise awareness in society about equality despite differences. It shows the process of integration of a child who up to that point has been very overprotected by his mother. It also shows how his pathology affects his family environment. For example, the feeling of abandonment that siblings may experience when their parents focus more on the child with the disease. The film teaches us the importance of friendship, especially in childhood, as a means to confront and overcome fears and insecurities.

Treacher Collins syndrome is a rare congenital craniofacial malformation caused by a mutation of the TCOF1 gene on chromosome 5. Patients often require multiple surgeries and expensive treatments.

Augustus “Auggie” Pullman (Jacob Tremblay) is a boy born with a significant facial deformity that has so far prevented him from attending school. With the support of his parents (Julia Roberts and Owen Wilson) he begins the adventure of joining the 5th grade of the local school and, with it, the world. A world unknown to Auggie. A world that opens up before his eyes when he decides to take the step of facing it.


Película Los Otros Xeroderma pigmentoso

Rare Diseases > Xeroderma pigmentosum

Film > THE OTHERS (Alejandro Amenábar, 2001)

End of World War II. Island of Jersey. Grace Stewart (Nicole Kidman) lives in a mansion with her two children, Anne and Nicholas, waiting for her husband to return. In this film, the children suffer from a rare disease that prevents them from seeing the sunlight. Their lives are spent in semi-darkness under the strict protection of their mother.

Xeroderma Pigmentosa is an inherited disease caused by mutations in genes involved in DNA repair. As a result, patients are extremely sensitive to violet light. In addition, they suffer from alterations in skin pigmentation and are more likely to develop tumours. The eye condition also stands out.

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