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| This disease affects 55,000 people in Spain, 75% women, and is the leading cause of unsupervised disability in the young population | "Everything is changing in a way that we never imagined ...
But for people with Multiple Sclerosis, the news is not so much: we live with the uncertainty of the disease with a thousand faces and we have to adapt ourselves day by day to an uncertain evolution.
And that is not an easy task because we also face solitude and social isolation.
And now to COVID-19 ”. This is expressed by Lorena López, who coexists every day with Multiple Sclerosis (MS).
We still do not know in detail the impact of COVID-19 on MS and neither on the lives of the thousands of people living with a chronic disease in Spain, and the new barriers that this pandemic has brought about.
Delays in treatments and tests, difficulties in accessing health and socio-sanitary care such as rehabilitation, less follow-up of patients, greater fear of going out on the street for fear of becoming infected ... Precisely, "this fear or fear can lead to prolonged isolation, which is not advisable for people living with a chronic disease such as Multiple Sclerosis, in which social connections are key to a better coexistence with pathology," says the director of Multiple Sclerosis Spain (EME), Pedro Carrascal.
This patient organization highlights the social barriers that people with MS face and that have been increased by COVID-19, as well as proposals to break down these obstacles, in the framework of World Multiple Sclerosis Day (next Saturday, May 30). I connect, we connect is the chosen motto with the purpose that no one faces Multiple Sclerosis alone.
And there is a human need to belong to a social network and to feel connected and integrated with it.According to a study by the POP (Platform of Patient Organizations), 52% of people with MS in Spain say they relate less than before having the disease.
Labor barriers, the social stigma of chronic patients, ignorance of what MS is and misunderstanding constitute the daily lives of these people who, in addition, face a National Health System with clear deficits in the care of chronic in general and those with MS in particular.
There are issues not overcome such as ignorance or insufficient training for health professionals; the lack of resources for efficient care (access to rehabilitation services: physical therapy, speech therapy, psychological and neuropsychological care ...); little or no additional information after diagnosis, dehumanization in the doctor-patient relationship, or lack of coordination between different specialists. A DISEASE WITHOUT KNOWN ORIGIN Multiple Sclerosis constitutes the first cause of unsupervised disability in a young population in Spain.
Today it is not known what causes this neurological disease or its cure.
It is complex and heterogeneous, associated with great uncertainty regarding the evolution in each person. COVID-19 has affected the quality of life and increased the barriers that people with Multiple Sclerosis encounter after diagnosis. From the associative movement of people with Multiple Sclerosis in Spain, it is considered urgent: 1.
Access to complete information on data related to Multiple Sclerosis and on the impact of the situation generated by COVID-19 on affected people, to national and international level.
2.
The recovery of normality in health and socio-sanitary care in Multiple Sclerosis, of which the activity of associations and foundations that work for the quality of life of people with MS is an essential part, which currently require approval urgent of extraordinary financing measures by the State and the Autonomous Communities. Furthermore, they continue to claim: ? Increased government support for Multiple Sclerosis research.
Although research to find a treatment or vaccine for COVID-19 is urgent and necessary, we ask that research on Multiple Sclerosis not be left aside, as it is vitally important for people affected by this disease.
? Automatic recognition of 33% of disability with diagnosis.
Multiple Sclerosis manifests itself on many occasions with invisible symptoms that are not always contemplated in the scales, but that significantly affect the quality of life of people affected by the disease.
? Access to comprehensive, personalized, free and continuous rehabilitative treatment in all Autonomous Communities, reinforcing the role that patient associations develop in this field.? Equity in the access to the pharmacological treatment that each person needs, in all the autonomous communities and in all the hospital centers.
? Greater commitment from employers and administrations in the adaptation of jobs and compliance with the 2% required by legislation in the hiring of people with disabilities. This Thursday, May 28, at 5:00 pm, the national online event #ConexionesEM will take place, together building the future, whose registration and full program can be found at diamundialem.org.
On this World Multiple Sclerosis Day page you can also download a gif to show support on social media for people with MS and their families, and leave a testimonial about what connects or disconnects us with others. At the end of the national event, EMACC from its YouTube channel, Live (EMACC Esclerosis Cartagena), will talk about how the association works at the local level, the fundraising campaign and how to connect with the association.
It is estimated that the EME event will end around 6.30pm, so EMACC will connect live at 6.30pm. The MS in numbers: 2,500,000 people have MS worldwide; 770,000 in Europe, 55,000 in Spain (it is considered a medium-high risk area), 1,500 in the Region of Murcia and 458 in Health Area 2 (Cartagena and Region), of which 75% are women. Prevalence in Spain: 120 cases per 100,000 inhabitants. The diagnosed cases have multiplied by 2.5 in the last 20 years. In the Region of Murcia, between 80 and 100 new cases are diagnosed each year.
Source: EMACC
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