The Art of CMT
In Italy, science and art are being brought together in a collaboration to bring awareness of a lesser known and poorly understood neurological condition.
Charcot-Marie Tooth, known as CMT, is one of the most common peripheral neuropathies in the world, affecting more than 300,000 people in Europe alone. An inherited condition, CMT disrupts the nerves that control muscles and relay sensory information, causing limb weakness, as well as numbness in the hands and feet, that slowly develops over a number of years.
“Not so many are aware that CMT is as common or even more common actually than multiple sclerosis,” says Filippo Genovese, Chief Scientific Officer of ACMT-Rete, the Italian CMT patients’ advocacy group, and President ad interim of the European CMT Federation.
Filippo, who has a background in pharmaceutical sciences, has been involved in patient advocacy for almost 20 years; he also has CMT himself.
“I really struggled with the diagnosis process… so I’m motivated to help other people to get more information and resources, and digest the science to make it more approachable and understandable.”
Several years ago, Filippo was contacted by Alice Babolin, aka Aliteia, an artist based in Venice with her own personal connection to CMT.
“Not me directly, but my mom and my uncle and my cousin.”
Aliteia explained the guilt and self-blame she witnessed when someone is not able to do something as simple as carry a glass to a table.
“What I saw in my family, there’s a part that wants to hide. But there is another part that you do not understand.”
“From my point of view, it’s very, very important that more people, more doctors, are able to understand what [CMT] is.”
Aliteia has called her work on CMT The Ballad of Human Mutations, describing it as a ‘manifesto for non-conforming bodies’.
Explaining the inspiration behind the title, Aliteia told the Peripheral Nerve Society (PNS), “Even inside the same family there are different characteristics.”
At a recent exhibition in Riccione, supported by the local Inner Wheel group, Aliteia combined sculpture and photographs of bodies affected by CMT with performance art. In one room, visitors were led blind-folded around the exhibition by a person with CMT in order to share the experience of a loss of balance; in another darkened room visitors used a flash light to reveal the words written in phosphorescent ink: ‘When your body doesn’t permit you to be yourself’.
Aliteia – whose artist name means ‘truth’ or ‘disclosure’ in Ancient Greek – told PNS “We have people that perhaps they are hidden. We would like visitors to start to think of [their] fragility… and to think ‘How can I take care of my fragility? I do not want anymore to hide that fragility’.”
Filippo and his team at ACMT-Rete make sure all visitors – those with and without CMT – were kept well informed.
“Every day during the exhibition there was always a volunteer who was trained to provide some general information and to direct people for further information [via] our websites.”
In ‘flash mob’ called Say it to your doctor, visitors were confronted with an actor who suddenly collapses in front of them. Having caught their attention visitors receive a leaflet from ACMT-Rete asking them to pass to their general practitioner to inform about a learning-by-distance course focused on CMT management and care.
“We are struggling with getting a diagnosis for CMT…”, Filippo laments. “The average time to get a diagnosis 10 years or so. There’s a lot of work we have to do to train the doctors to recognise the symptoms.”
It is clear that Filippo and Aliteia make a powerful partnership for CMT advocacy. They next plan to take The Ballad of Human Mutations to Naples, and have ambitions to increase communication and awareness of the condition internationally.
“What I want to do is to engage as a society,” says Aliteia.
“People with CMT came up more than one time; they say to me, ‘Thank you… because really now I feel that people understood me.’”
Information
The Ballad of Human Mutations by Aliteia has already been showcased in Milan, Padua, and Riccione. The next exhibition will take place at the historical archive of the Fondazione Banco di Napoli (Naples, Italy) from 18 September to 10 October, 2024. To find out more about Aliteia’s work and future exhibitions, please visit: https://aliteia.it/the-ballad-of-human-mutations/
You can find out more about the work of Filippo Genovese and his team at ACMT-Rete here: https://www.acmt-rete.it/
Interview by: Alexander Davies (University of Oxford)
Editors: Long Davalos (University of Cincinnati), Allison Nordman (Peripheral Nerve Society)