Multiple Sclerosis and Change : 2018 – Your life will never be the same again (3/4)

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Shortly after the MS Sessions, I attended the MEP Brain, Mind, Pain Interest Group at the European Parliament in February 2018 which worked around the topic of how the EU can #MakeWorkWork for young people with chronic conditions relating to disorders concerning the brain, mind and pain. It was destined to provide concise recommendations for high-level policy makers. I was fortunate to be able to participate with my fellow MS advocate and ESMP YPN Member Jacobo.

I knew this is my direction – the path I needed to follow: Being a part of social change – a social movement – of ensuring a better quality of life for those facing the same struggles – for those living with multiple sclerosis. It was the start of my campaigning for difference; for social inclusion, for non-discrimination. I without consciously knowing grew into a patient and disability advocate. For my identity did change – I am no longer able-bodied; I may be a person with a disability but hell what determination do I have.

In March, I applied to become a board member of my national MS Society – they took me in with open arms. They are a prime example of what inclusive leadership looks like. We all have different traits – but that is what makes us strong. 


Working together to ensure our vision can become a reality. Before reaching that point the year had a rough start though – I relapsed; and it was hard. This is where I made the choice of changing my DMT for I knew that I would rather live with the possibility of a severe adverse reaction – and even death - than not to live my life to the fullest (which actually is a slow death if you think closely about it). 


In May, an interview followed by an online magazine where I was allowed to share my story to spread awareness of multiple sclerosis in Luxembourg – something so desperately needed. (https://moien.lu/multiple-sklerose-net-verstanen/) I thought of all the others who experienced the same difficulties with no one to look up to, no one who really understands. The isolation – the loneliness – the feeling of being misunderstood; it is a certain kind of helplessness which does not have to be there. It simply does not have to be this way. We are not alone and strength lies in numbers –and I sincerely wish for other young MSers to join the conversation – to be a part of something greater. This is something I am willing to stand up for – somebody has to speak up. I am so fortunate that Multiple Sclerosis Letzebuerg believes in me as their youngest board member – their faith in me fuels me. I was allowed to represent our Society in June at the EMSP Annual Conference where I had the pleasure to meet many other young members of the Young People’s Network as well members of the MS societies over Europe. So much has changed in only 6 months…

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