You are not alone against neuromyelitis optica

You are not alone against neuromyelitis optica


Loss of vision, difficulty moving, bladder and intestinal disorders, as well as dizziness, hearing problems, hiccups and itching. More frequently in women, often in full working age, between 35 and 45 years old. It is the snapshot of those suffering from neuromyelitis optica, a rare autoimmune-based disease that affects the nervous system. And that can leave patients lost, angry, fearful, prey to anxiety and depression at times, faced with the unpredictability of the disease. Because the spectrum of neuromyelitis optica disorders or NMOSD strikes in waves: exacerbation phases (attacks) alternate with recovery phases in which symptoms recede, often never completely, with the risk of losing life or the ability to move. However, patients are no longer alone with the birth of AINMO – Italian Neuromyelitis Optical Association, the first Italian association dedicated to neuromyelitis optica spectrum diseases (NMOSD) and diseases associated with anti-MOG antibodies (MOGAD) – which today launches the awareness campaign and information on Neuromyelitis Optica (NMO).

Neuromyelitis optica, research and clinics change the disease

The image chosen for the awareness campaign is that of a spiral staircase, a spiral. The one into which those affected by neuromyelitis optica risk falling, a rare pathology which in Italy is estimated to affect 1500-2000 people, serious if not treated, highly disabling. It is caused by an abnormal reaction of the immune system, which damages the nervous system, causing inflammation and destroying neurons. Similar to what happens in multiple sclerosis, with which it was confused for a long time, until research shed light on the different biological mechanisms and evolution of the diseases. And it is precisely thanks to research and the commitment of clinicians that today there are diagnostic criteria that can allow us to arrive at the diagnosis, giving people with NMOSD the possibility of having access to treatments to manage the diseases, reduce neurological damage and the risk of new attacks.

An association like a compass

Precisely to raise awareness of the new reality of NMOSD, support patients and caregivers, last year AINMO, the Italian Neuromyelitis Ottica Association, was founded on the initiative of AISM (Italian Multiple Sclerosis Association). In the month dedicated to neuromyelitis optica, AINMO reiterates its closeness to patients with the awareness and information campaign signed by the illustrator Paolo D’Altan: the disease can be a spiral, it can be full of pitfalls, but you are not alone.

The presence of an information, orientation and support network for patients and their caregivers can make the difference, as Elisabetta Lilli, president of AINMO, explains. “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. You are not alone. No one is alone with their illness as there is an association dedicated to giving a voice to all those affected by this disorder.”

More information on neuromyelitis optica On the website of Ainmo all information on symptoms, diagnosis and treatment of neuromyelitis optica spectrum diseases (NMOSD) and anti-MOG antibody associated diseases (MOGAD). A neurologist, a social worker and an employment consultant are available to answer the AISM toll-free number 800 803 028 from Monday to Friday.


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