YPN Series: Donna’s story from the United Kingdom07.11.2018
By our Young People’s Network member & guest author: Amandeep Donna Nahal (UK MS Society)
MS Sessions experience
I can remember entering the hotel in Prague, Czech Republic in November 2017 where the MS Sessions festival was being held. I met with an embrace of energy that was overwhelming, then I knew, this was going to be something amazing – and it was!
It was something I had never experienced before, an exclusive gathering for young people with MS. This was a group of people with one thing in common and it had brought them together. Yet, we were so diverse in our qualities, interests and experiences. And all this, making us inspirational individuals in our own right.
MS Sessions, and the amazing people I met there, was the spark that ignited my passion to get actively involved in my local MS community and my local MS Society- The Birmingham MS Group. I’m now a valued member of this group, based in Birmingham, UK. And my focus is on engaging with more young people.
We are underrepresented. We have identified a lack of participation of young people in this wonderful group. I have also seen that there is a lack of diversity, a lack of people from ethnic and minority communities. This is something that is true across the whole MS community, from national forums to local gatherings.
I was grateful that Emma Rogan (EMSP), raised the issue with me at MS Sessions, on a European scale. She too identified that there is an under-representation of Black and Ethnic Minority communities and these communities lack participation in MS specific activities. We both agreed there was an issue here and I’m passionate to address it.
Education through young advocates
I am British Indian and I have experienced this personally. As I have matured and learned more about my own community, I see that there is a fear of disability. I, myself, use a mobility scooter. I believe, this is due to a lack of education on what it means to have MS or any other chronic illness. As a young Indian person with MS, I felt ostracized by my own community. I know this was not the intention of anyone in the community, as the people are loving, kind and the community has humanity at its core.
I believe it’s my responsibility to offer education by speaking about my experiences as well as advocating for change. That means reaching out to my community in a way that I know, and in ways that people will understand. It was an honor to become part of the EMSP Young People’s Network focus group. Through my involvement here, and working with some truly incredible people, we are addressing the issues young people have after diagnosis. We are developing policies and strategies, so we as a Network can make an even greater impact in the lives of all young people with MS in Europe. We are one community with people of different ages, different backgrounds and different walks of life. It is my hope that with a focus on understanding, education and togetherness, we can improve the lives of everyone in this special, diverse community.
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We would like to hereby express our gratitude to Wouter Marijsse (Belgium), Patrik Puljic (Croatia), Tamara Dugalic (Serbia), Krystalenia Ampreou (Greece) and Mate Tagaj (Hungary) for the invaluable support with the translations of this article.
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