Neuromyelitis optica is a rare disease: approximately 5 people out of every 100,000 suffer from it. It is often confused with multiple sclerosis, and instead requires specific approaches for diagnosis and treatment. For this reason, it is important to talk about it. And this is what Aism (Italian Multiple Sclerosis Association) and Ainmo (Italian Optical Neuromyelitis Association) intend to do, with a new communication campaign just launched under the High Patronage of the President of the Republic, which aims to bring out understanding and awareness of this serious disease of the central nervous system.
Neuromyelitis optica, how to improve the quality of life of patients by Irma D’Aria 07 September 2023
Neuromyelitis optica
The neuromyelitis optica spectrum disorders, or NMSD, represents a group of serious autoimmune diseases involving the central nervous system. They mainly affect the optic nerve and spinal cord, causing inflammation, the loss of myelin (the covering that covers the axons) and neurons. They are extremely rare diseases, and mainly affect young adults between 35 and 45 years of age, with a higher incidence in women (9 out of 10 patients). Currently, in Italy, it is estimated that between 1500 and 2000 people are affected by NMO.
“Neuromyelitis optica is not curable, but today, thanks to scientific research that has made giant strides, we can diagnose it early, deal with it and offer support, knowing that there is a point of reference,” explains Elisabetta Lilli, president of Ainmo. “You are not alone. No one finds themselves alone with their disease since there is an association dedicated to giving a voice to all people affected by this disorder. The campaign is an invitation to continuous reflection and constant commitment to understanding and supporting those living with NMO. The goal is to raise awareness by promoting a lasting commitment to addressing the challenges of these diseases.”
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The ladder
The focal point of the new campaign is an image: an infinite spiral staircase. As the promoters explain, it symbolizes the unpredictable fall into the disease, and offers an intense vision of the reality experienced by those affected. The sharp steps and the use of colours, alternating and intense, represent the physical and psychological drama experienced by those who find themselves facing this disease. In the video that accompanies the image, visible on the Ainmo website, a message of hope also arrives after the fall: a light at the bottom of the staircase, which reminds us that yes, neuromyelitis optica disrupts life, but you are not alone.
The visual of the campaign, born from a discussion with people with NMO, clinicians, caregivers and family members. “The intention of the campaign is to make even those who don’t even know what we’re talking about perceive the feeling that the people with NMO themselves say they have had since the diagnosis,” explains Paolo D’Altan, illustrator, director and teacher. of the International School of Comics in Milan, who created the visual.
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As we were saying, at the bottom of the spiral that symbolizes the disease there is a light: the support that comes from Ainmo, the volunteers and the doctors. The campaign conveys the message that, despite the gravity of the situation, you are not alone; There is concrete support for those facing NMOSD and MOGAD, a disease associated with anti-myelin oligodendrocyte glycoprotein antibodies. Ainmo invites everyone to discover the awareness campaign and find support and information on the site www.ainmo.it. For further information, the toll-free number 800 803028 is available.