EPF Youth Group - How we spent our Summer

I think that the majority of the world would agree that 2020 has not been the year and the beginning of a new decade for which we had hoped. For all patients, from different patient communities the lockdown and social distancing has taken higher extremes and more precautions needed to be taken. However, within all of this it has not changed the role of each of our patient advocates within the European Patient Forum (EPF)’s Youth Group. Below are some quotes from some of our members describing how they have spent their time in lockdown and what measures they each felt was important to take:

As a young person with neuromuscular disorder, I am used to staying at home, so the biggest challenge wasn’t the lockdown, but what kind of measures to take, so I can protect the health of my beloved ones and other people, trying to come back to relatively normal life. This may cause stress, but I found a way to overcome it thanks to the patient advocacy. The support of EPF Youth Group, different European associations, EPF section about COVID-19 and the opportunity to attend online events and webinars, meeting virtually new people and improving skills as patient advocate helped me to realize that together we are stronger as patient community and we can cope with these challenging times.”

Jana, Bulgaria

"'m lucky that my condition doesn't put me at increased risk from coronavirus but trying to keep as safe as possible has been really important to me. I recently moved to a more rural area which offers a ton of opportunities for walking and exploring outdoors - when the English weather allows! Online activities with my patient groups (XLH UK, The International XLH Alliance, and The Find a Cure Foundation), and with the EPF Youth Group and STYPA, have also kept me busy and creative. Most importantly, they've kept me connected with so many different people so that I still feel like there's a world and a future beyond my 4 walls and restrictions, and that has really helped to get me through these few months."

Sally, United Kingdom                                      

"I have found the changes to our daily lives in Ireland to be a challenge. My mental health has been affected, which is the case for many others too. I meditate and I limit my screen time in an effort to cope with the stress. When I go out, I wear a mask and I wash my hands regularly. I am limiting my social contacts as much as possible."

Marcus, Ireland

When the lock-down started I lost my job in a small restaurant and moved back to my hometown to stay with my mom. Because we both have asthma, the beginning of the pandemic was a scary time. Luckily, my university offered distance learning and my doctor assured me that I do not belong to a risk group.

Marleen, Germany

My boyfriend at the time was working for the government when the crisis broke out. So, he couldn't work where he was and remained at home with me. We played a lot of World of Warcraft and other video games together and our friends. When it got warmer, I went to the lake to swim and relaxed in the park where there were a limited number of people. Slowly my life got sort of back to normal, with some restrictions, meaning social distancing and wearing a face mask in public.

Marlou, The Netherlands

During my time in lockdown I found it incredibly important, but at times challenging to keep some structure and routine in my daily life. When schools closed, I realized from the families within our association Unique Smiles that their daily lives were significantly changed, not only because school was closed, but because therapies were also being cancelled or took place virtually. I felt that it was important to add structure to the children’s lives and to have fun together socially while still being virtually safe. Therefore, during lockdown, I held weekly cooking and arts & crafts sessions for any child who wanted to sign up from our association to join and take part in. It is important for us to remember that humans are  social beings; therefore, the term social distancing cannot be applicable to us. However, we can be physically distant while still being social with one another and have fun. This is what I have learned throughout my time in lockdown.

Anastasia, Cyprus

During summer, I enjoyed exploring other ways to continue advocating for awareness and, with so many others trying new things, I found the confidence to create some of my own content for social media. As well as this, I used the time to educate myself on nutrition and exercise, which has helped me immensely.

Erin, Wales

As the lockdown came so fast, we all finally became aware that this is a very serious situation. Personally it wasn’t very hard for me to stay home and to be responsible but I was shocked how self-sufficient people can be. At first, everyone thought it would only be dangerous for older people and chronic patients so they were willing to ignore us like we were expendable or just not worth their effort. Despite this, I did my best to be responsible to myself and others, respecting all recommended measures, but still got infected with Covid-19. It affects your whole body, recovery time is really long, and having a chronic condition made it only worse and I found myself separated from my friends and family. My whole life was suddenly postponed together with work and college. Hopefully things will move in right direction and all of us will understand this is a team effort and if we are united, we can win.

Nikola, Serbia

Unfortunately, there is a second wave hovering over Europe, but we are now more knowledgeable and prepared than before and it continues to be our personal responsibility to take appropriate action.


This article was written by Anastasia Sofia Semaan, EPF Youth Group Member