Under the World Multiple Sclerosis Day, which marked the 30 of May, ANEM a part of the project "Stories Multiple", giving voice to the main needs in Multiple Sclerosis, starting from actual testimonies to identify the determinants for an early diagnosis and a course of more positive disease.
The project is developed by Novartis, designed and implemented in close collaboration with leading patient organizations – National Association of Multiple Sclerosis (WE), Multiple Sclerosis Portuguese Society (HOPE) All and Association with Multiple Sclerosis (TEM).
Its main objective is to give voice to the patient, starting from real testimonials of people who live and live daily with this disease (ill, Caregivers, their family and informal support network) and that the face of a positive, transmitting in its multiple stories a message of encouragement and, at the same time, warning of the most crucial needs and aspects of those living with the disease.
In addition to the collection of evidence and disclosure, the project also includes a series of gatherings to be organized by the Patient Organizations. These gatherings will bring together the multiple sclerosis community around issues that concern them and ranging from conditions of personal and professional life of caregivers, the daily limitations of patients, importance of rehabilitation, continuous care and family dysfunction.
The project is not intended to show extraordinary stories of people with Multiple Sclerosis, but real people testimonies, despite illness, can lead their lives as normally as possible. Also intends to point out aspects that have been decisive in how the patient and their informal network face multiple sclerosis, namely the importance of being alert to signs and symptoms and not ignore them, either before a possible diagnosis or during the course of the disease.
"Breaking down prejudices and make society aware of the possibility of people with MS can have quality of life and remain active members of society, if diagnosed and treated early it is one of the most important aspects of this project, which will have a nationwide, allowing also get a fashion photography as we are supporting these patients ", adds Lourdes Silva, coordenadora da ANEM.
Multiple sclerosis affects about 5 thousand Portuguese . Worldwide there are over 2,3 million people with this chronic inflammatory disease of the central nervous system that manifests itself in young adults, between 20 e os 40 years old, and interferes with the patient's ability to control functions such as vision, locomotion, and the balance. Women are twice as likely to develop MS than men . The disease has a significant impact on quality of life of patients and their families . More of 90% of people with MS complain of fatigue, constituting one of the symptoms with greater impact on quality of life and productivity of patients .
The testimonies collected in this project and the completion of nine gatherings come out conclusions and recommendations that will be released later in the year, as part of the National Day Person with Multiple Sclerosis.
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