Representing young people with MS at the highest European level

EMSP continues building on the current Young People’s Network to develop a stronger European network of young people living with Multiple Sclerosis and to increase the number of patient advocates on the continent of Europe. Here is the experience of one young person with MS, Cornelia Păuna from Romania.

Before Martin Luther King’s ‘I have a Dream’ speech at the March on Washington on August 28, 1963., James Allen wrote “The dreamers are the saviours of the world”. I grew up in a society where there was a negative connotation on being a ‘dreamer’. The examples above teach me I should not be ashamed that I dare to envision a better world for people with chronic conditions, a world where we have access to treatments and information, where we can think about our careers and we are not stigmatized. Moreover, I learned I can do something besides dreaming about it.

A young MSer’s motivation to advocate at European level

My expectation of my involvement in advocacy work is that patients become more aware of their rights and don’t belittle their achievements and efforts. I believe everybody has a choice; but do we know our choices? What tests should we have? What treatments best suit us?  What vaccine best suits us (if any at all)? In these times where everything is on high speed it is no wonder the time spent with our specialists is reduced. This is where we, collectively, come to the fore- as a community, presenting our needs and questions. I believe the MS community has a great impact on a patients’ life and we should encourage people to join and speak up. At the end of the day, we are the best narrators of our story.

Why you should also consider getting involved

Growing up I had to overcome several labels that I received by default. To all these labels, I now had to add another one-  patient. I found there are also multiple feelings and experiences that are similar among patients, regardless of disease. I discovered this with my involvement in STYPA (European Patients Forum Summer Training for Young Patients Advocates) last year, a training programme where young patients across Europe joined and worked on their advocacy projects. What I learnt is the meaning and importance of being part of something bigger than me– a community. People are struggling and coping in so many ways with their situation. Right now, we are all experiencing the unexpected and at times like this, it is important to know that we are not alone.

There is a great advantage of being alive right now, a time when we have so much freedom. For most of us, we can communicate whenever, wherever and with whomever we want. I believe that being connected to other patients at European level not only brings personal advantages but also opens doors to previously unimaginable opportunities. We live in different countries, with different cultures or standards of living and so we have a remarkable number of things to learn from each other. My motto since I started being conscious of these possibilities is “A free person is a happy person”. To me, being free means to not be constrained in any way by society and to know all my choices, beyond all borders.

Fighting for more specialized MS Centres­­

My current focus is on a project of opening new specialized centres for multiple sclerosis patients. Roughly half of the existing centres are located in Bucharest, Romania. This means that many patients need to travel hundreds of kilometres to get their treatment and be checked by their neurologist. This does not come easy, particularly to MS patients. More centres would also mean more specialized doctors and nurses. Therefore, each doctor would have fewer patients to treat and thus more time to focus on everyone which can translate into prevention and better quality of life for patients. At the beginning of this year the law regarding the opening of new MS centres changed and now our project has a hopeful prospect.

Against discrimination and challenges

People from the MS community are facing a great amount of discrimination and challenges while trying to continue with their life as normal as possible. What drives me is hope and love of humanity. I do not want to (and will not) give up on the idea of a county and world where ‘equality’ is the premise. I truly believe we have a tremendous power. It is a matter of coupling it with the correct tools which can result in something we all want- equal rights and reduced suffering for all.

If you would like to be part of the EMSP Young People’s Network, please send an email to Emma Rogan. Tell us about yourself, where you’re from and we’ll get back in touch.