"World MS Day calls attention to the need for inclusion"

The motto for this year’s World MS Day on May 27 in Germany is "MS tears holes into everyday life". What exactly is the reason behind this motto?

Dorothea Pitschnau-Michel: Being diagnosed with MS means more than just being confronted with a still incurable disease of the central nervous system whose course is unpredictable. For each individual, it means a big turning point in his/her life, changes his everyday routine, her family, social and professional life. This pertains both to newly diagnosed persons as well as those who have been affected for a long time and includes people of all ages. All of them know that "MS tears holes into their everyday lives". Yet the slogan also means that the disease can cause so-called "black holes" to occur in the brain and spinal cord. Important skills such as walking, seeing and grasping can be lost. Medical treatment and individual counseling are essential to lead a self-determined life. The DMSG wants to call attention to this and raise public awareness for the potential effects of visible and invisible symptoms of MS. Whereas the DMSG posters and postcards visualize the motto, three MS patients talk about the holes MS tears into their everyday lives in the DMSG flyer.  

Why and to what extent does the German motto differ from the international one?

Pitschnau-Michel: The actual motto of the Multiple Sclerosis International Federation (MSIF) which includes 44 national MS societies around the globe – among them also the DMSG – reads "Access" and is deliberately general to give national MS societies the chance to create and animate their own eye-catching slogan. With the hashtag #strongerthanMS, the MSIF encourages an international exchange of experiences and virtual encounters on Twitter. DMSG points this out in its publications and invites people to join in.

In what way is the World MS Day important to people living with multiple sclerosis?

Pitschnau-Michel: The purpose of the World MS Day is to specifically raise awareness for multiple sclerosis and its effects on everyday life. During the events and activities within the scope of the World MS Day, patients with MS use the opportunity to communicate with other people, articulate their needs, describe the problems that go along with this disease, but also to eliminate prejudices. This is their day to attract attention to their cause and call for solidarity – knowing that during this day, multiple sclerosis is being discussed in all parts of the world. MS is a global disease. There are 2.5 million people worldwide living with MS; 500,000 of them live in Europe and according to a current study by the German Federal Social Insurance Authority (German: Bundesversicherungsamt), possibly more than 200,000 MS sufferers live in Germany. The difficulties that go along with this can only be solved through global partnerships. This applies to all areas: global causal studies and basic research, the implementation of therapy standards as well as the implementation of social participation – the World MS Day provides an excellent platform for this.

What does inclusion mean to you?

Pitschnau-Michel: Every human being has a right to self-determination, freedom from discrimination and equal participation – at least this is what the UN Convention on the Rights of Persons with Disabilities, which also applies to Germany since 2009, states. Unfortunately, we are still a long way away from an actual implementation and this needs to change. As the representative of MS sufferers, the German Multiple Sclerosis Society DMSG considers its principal task in advocating the vested rights of persons with disabilities and chronic diseases, which also includes MS, to unhindered access to benefits in health care and social insurance, equal opportunities in education, training, jobs, social and family life on all levels. Creating public awareness for the need for inclusion is a step in the right direction and is also among the concerns of the World MS Day.