Multiple skleros undoubtedly influence the quality of human life from the diagnosis. In Spain More than 47,000 people live with Multiple Sclerosis.
Although there are more and more patients who, thanks to pharmacological and rehabilitation treatment, can take up challenges that seemed unthinkable for a few years ago, the physical and cognitive symptoms that may appear, influence some activities. In a physical level, these symptoms can influence speaking, walking, seeing clearly or keeping a balance. In the mental level, it can influence, for example, memory.
The symptoms, often "invisible" and misunderstood, express differently to every person who has Multiple Sclerosis and, therefore, each will have a different perception of life. Thus, the concept of quality of life with MS is very personal and variable. In addition to the own heterogeneity of the disease, in any case, other factors also influence, such as the place where people live, their culture and their values, among others.
"A Person with Multiple Sclerosis definitely lives with a higher level of uncertainty than the rest, but that does not imply being tied to hand and foot. It is important that we are active in the search for a better quality of life," says Alfonso Castresana, president of Multiple Splerosis Spain and father of a affected person.
Tips to live better with Multiple Sklerosis
Multiple Sklerosis Spain and MASIC IDEAS Foundation, with the support of Merck, have collaborated in the project "Tips to live better with Multiple Sclerosis. A tool to improve the quality of life of people living with MS".
The Tips to live better with Multiple Sklerosis are practices that can be useful while living with MS in our country. They were edited by collecting some messages, tricks and tips that, on the occasion of the World's Multiple Glossary Day of 2017, shared people living with illness through social networks and in personal actions.
These councils are classified into the Seven Principles to improve the quality of life with MS, which was developed by the International Federation of MS (MSIF) after making extensive consultation with people of more than 30 countries. The Principles are based on the knowledge and experience of people affected by MS worldwide, and allows us to learn more about how Multiple Sclerosis influences the quality of life of those affected: patients, families, friends, caregivers and the nearest environment. They identify the main areas, in which every small progress can mean a positive change in the quality of life with MS.
1 The strengthening, independence and central role of people influenced by MS when decisions influence them
2 Access to complete and effective treatments, and provision of the changing needs related to physical and mental health that arise with MS
3 Support to the network of relatives, friends, loved ones and free careers
4 Accessible and flexible work, volunteering, education and leisure
5 Places, technologies and public and private transportation that are accessible
6 Economic resources that fit the changing needs and cost of living that MS implies
7 Positive attitudes, policies and positive, supporting equality and face of stigma and discrimination
In Advice EM, each principle is associated with an illustration – a comic style – to facilitate its understanding. "The result is a document and easily readable post, in which suggestions suggest they can inspire or encourage," says Teresa Terrén, president of the MÁS QUE IDEAS Foundation. For example, in order to achieve the power of people with multiple sclerosis, we invite access to useful, accurate and up-to-date information and adapt it to each case, or be involved in the decision making of the disease.
"The purpose is to help people living with MS reduce the dependency that the illness generates in their lives. Therefore, it is necessary to work in two areas: the individual, providing them with all the tools that enable them to have greater autonomy; and the social, facilitating MS's knowledge and recognition, to avoid the overall stigmatization of this invisible and unknown pathology in society in the set, "explains Ana Polanco, director of Corporate Affairs and Mathematical Technologies Company Merck.
About Multiple Glucose
Multiple glycerosis is a chronic disease of the Central Nerve System. It is present throughout the world and is one of the most common neurological diseases among the population of 20 to 30 years. It can produce symptoms such as fatigue, movement problems, lack of balance, pain, visual and cognitive changes, speech difficulties, trembling, etc. The MS course can not be predicted, it is a heterogeneous disease that can vary greatly from one person to another, so it is called "the disease of a thousand faces". It is not contagious, not hereditary, nor dead. It happens more often (more than double) in women than in humans. So far, its cause and its treatment are unknown.
Click here to download the poster "Tips to live better with EM"