I joined the RARE Youth Revolution team in July 2022, a week after I graduated university. I was studying Business Management and Psychology at the time, and I wasn’t sure what I wanted to do.
After seeing a LinkedIn advertisement for the Youth Coordinator role, I jumped at the chance and was lucky enough to be offered the position. I was extremely excited to start my journey into the rare disease space because I was diagnosed with lupus when I was 14 years old. Even though I was diagnosed eight years ago at that point, I was never aware of such a welcoming and encouraging community—one that was extremely safe and supportive of what young people impacted by rare disease go through. It made me feel confident that I was about to start a journey where I could finally share my story, whilst supporting other young people in a similar position to me.
One thing I loved about this internship was helping other people within our community. The youth rare disease community is such an inspiring place, with so many fascinating stories. I was able to share them through article writing, social media content and events. I created social media campaigns, including one on showing the hobbies of young people impacted by rare diseases, the Personal Stories campaign launched on Rare Disease Day, and Disability Pride Month (which will later become an Impact Report). I also helped with the collaboration with Dr Hen Says, creating the text for their medical gaslighting post on social media. Medical gaslighting is a topic I’m greatly passionate about advocating against, because I’ve been victim to it through the combined discrimination I’ve faced as a young, disabled Chinese woman living in the UK, and I am glad I got to be part of helping raise awareness for it. It allowed me to work with other young individuals and help them show small aspects of their lives to show we are more than our rare disease.
I published 60 articles from various contributors onto our website. I always felt like a VIP, being able to read their work before anyone else and being able to find ways to raise more awareness about their conditions. I also wrote my own articles, which I’ve always found was a great outlet for me to express how I feel living with a disability. I was most proud of my article on Imposter Syndrome and responding to the outrageous Daily Mail article accusing young girls and women of being addicted to being sad and posting content to generate likes and money. In my opinion, it was truly an ignorant article and I wanted people to know that it was far from the truth, that all of us are just trying to advocate for our community and show the nature of what we live with.
The RARE Revolution team also gave me the chance to contribute pieces for the main magazine, which was a great opportunity for me to write in a more professional capacity. I wrote one on the realities of living with Bardet-Biedl syndrome (BBS) ‘Through Everett’s eyes’ and ‘Single-use plastics in healthcare’. I found a real love for working with other people and ensuring their stories were brought to light.
I have always enjoyed creating video content, which is why I tried my best to make as many videos as I could for RARE Youth Revolution’s YouTube channel. I came up with the Personal Stories series, which was used during RAREfest22. It consisted of nine individuals sharing their stories and an individual symptom they face on a daily basis. It was important to me that I could provide snapshots into people’s lives in a clear and engaging way, and hearing all their stories is a great way to learn about individual conditions.
I also wanted to help Katie with her My life, my genetics project, which she did an incredible job overseeing. It is an amazing project that consists of videos providing more accessible information on genetics for young people impacted by rare diseases. It was truly eye-opening to learn more about genetics in rare disease, especially since that is not something healthcare professionals always speak openly to me about. My topic was Newborn screening, and I realised I had more to say than I initially thought, as a young woman where my rare condition has a genetic component. Although the aim was to educate other people on genetics, I learned a lot myself and found the project useful and educational, and I hope others thought the same!
I was also excited to continue the RARETalks series created by Katie and Esther a few years ago, where I facilitated eight videos. I absolutely loved working on this series because I was able to talk to inspiring young people impacted by the same rare disease and show the similarities and differences of their experiences. I learned a lot conducting this series, and I thoroughly enjoyed speaking to the participants and getting to know more about their stories. I also enjoyed editing these videos, even creating a bloopers reel for some of them to show how much fun we had in creating and raising awareness together.
I was encouraged to organise and attend events, something I thoroughly enjoyed. My first ever presentation was a couple of weeks after the start of my internship, where I delivered a talk on recruitment for OneRARE. Since, I’ve attended events both virtually and in-person. I attended RAREfest22, organised by Cambridge Rare Disease Network (CRDN) in November 2022 and was introduced to Lucy McKay from Medics 4 Rare Diseases (M4RD). I worked with Lucy to create the Rare Youth Monologues, which is one of my greatest achievements. It allowed three young people, including myself, to share one aspect of what it is like to live with a rare disease as a young person. In this space, there was no applause, no feedback and no recording, to give us all the chance to speak freely and comfortably, with no judgement or opinions. Before this, I had never presented in person and it was truly empowering. I was extremely proud of myself for getting up on stage, and speaking on something important to me (medical gaslighting), whilst being extremely vulnerable.
Improving my public speaking skills was one thing I really wanted to improve when I first started my internship, and I’m thankful RARE Youth Revolution gave me many opportunities to do this. After my monologue at RAREfest22, I conducted a presentation on Engaging Young People in Healthcare for the British Paediatric Surveillance Unit (BPSU) Symposium and two London hospitals, explaining my transition experience from paediatric to adult services. I never realised how much I would enjoy sharing my story with people who clearly cared about what I had to say, in such a safe environment, where for the first time, I really felt heard.
I ended my internship with a bang, helping to organise The Rare Fair in North Carolina. My role was to find young people impacted by rare diseases to take part in our planned presentations, panels and Rare Youth Monologues, which I brought to America with the support of Lucy. I had the most wonderful time whilst I was there, interacting with so many inspiring people who had so many incredible insights on our reality, which were also really relatable to me and made me feel less alone. I was able to share my own insights as being part of three panels: ‘Genetics’, ‘Medical affairs’ and ‘Becoming an effective advocate’. It was great being part of panels with other young people in a similar position to me, and it was lovely to learn another perspective (shout-out to YARR and HAEA Youth!). One thing I absolutely loved was how even with all the added obstacles and challenges we’ve had to face at such a young age, every single one of the speakers had a positive outlook on life and was there to create change. Before the ‘Medical affairs’ panel, I also conducted my BPSU presentation again on ‘Engaging young people in healthcare’, which was nerve-wracking, but I loved doing it.
I also got to moderate the Rare Youth Monologues. It was amazing working with the next group of ‘monologuers’ and being behind the scenes working with them. Lastly, I facilitated the Transition workshop, which was inspired by Breaking Down Barriers and Alström UK’s new T-KASH (Transition – Knowledge and Skills in Healthcare) model. Joe Rumney, content and editorial assistant at RARE Revolution, and I worked hard on creating the booklet that was used during the workshop, and I enjoyed creating an environment where people could think about questions to consider when going through their own transition process. If you had told me last year that I would have done so much public speaking in one year, I would have never believed you—I couldn’t be happier to be more confident in this skill. I even ended doing a fashion show for adaptive fashion, something I never thought I would say yes to doing.
Interning for RARE Youth Revolution has paved my way for a future in youth advocacy—a path I never knew was an option. I can now confidently say that I am a patient advocate, and I immensely enjoy supporting other people to share their stories too.
I hope that I can continue to share my reality of what it is like to live with a rare disease and create a safe space for other people to do so as well. I got to meet so many inspiring people, both at the RARE Revolution team, and through collaborations and events, and I know that some of these connections will last a lifetime.
I couldn’t be happier with my internship at RARE Youth Revolution, and I cannot wait to see what they do next!
You can follow Chelsea on her advocacy Instagram account: @thechelseainfusion