Similar yet distinct at the same time. Thanks to advances in science, we now know that autoimmune-based degenerative diseases affecting the nervous system, once considered manifestations of multiple sclerosis, are actually different pathologies, with different mechanisms and needs for patients. They are the Nmosd (diseases of neuromyelitis optica spectrum disorders) and the Mogad (disease associated with antibodies against myelin oligodendrocytic glycoprotein (MOG): rare diseases, which affect from 1500 to 2000 people in Italy. For them today, on an initiative of Aism, Ainmo was born, the first dedicated Italian association.
Nmosds are diseases of the neuromyelitis optica spectrum disorders, a group of severe autoimmune diseases affecting the central nervous system, with lesions primarily affecting the optic nerve and spinal cord, causing inflammation, loss of myelin and neurons. MOGAD, an anti-Mog antibody-associated disease, in which the immune system mistakenly produces antibodies (of the IgG type) directed against the Mog protein. This leads to inflammation and damage to myelin in the central nervous system.
Nmosd is a rare, serious and disabling disease; in Italy it affects over 1500 people, almost 5 people every 100 thousand worldwide; with a prevalence of 1-5 cases per 100,000 inhabitants, and one new case per 770,000 people per year. About 90% of cases concern the female gender (9 out of 10). The age of onset is between 35 and 45 years, while cases present in children and the elderly represent 18%. The onset of Nmo can cause disorders that can lead to severe disability such as loss of vision accompanied by difficulty in movement, pain, bladder and intestinal disorders, but there may also be vomiting, hiccups, itching, facial paralysis, dizziness, to hearing.
Cases of Mogad are also very rare. There are no valid estimates of its incidence yet. The available data range from about 0.1 to over 3 cases per 100,000 inhabitants. Women are the most affected, around the age of 30. Children and adolescents are affected by Mogad more often than adults, with more severe clinical attacks but with faster and almost always complete recovery, while adults can have recurrent attacks or relapses.
Although these two rare diseases can cause symptoms similar to multiple sclerosis, they are now considered separate diseases. Both are autoimmune diseases. Those affected have similar needs and requirements. Both diseases are followed by neurologists and a multidisciplinary team.
«Ainmo’s goal is to support the community of people with Nmosd and Mogad, promoting research, new treatments for a better quality of life and the sharing of information between patients, their caregivers and social and health workers. Asim has always been dealing with this disease. From today she will be even more incisive », explains Mario Albert Battagliageneral manager of Aism and vice president of Ainmo.
«With AISM we founded AINMO, to give a voice to all people with neuromyelitis optica and bring forward their requests. Today specific therapies are arriving in Italy that can modify the course of the disease but there is a lack of global management and free access to therapies”, he declares Elizabeth Lilli president of the newly formed Ainmo.