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Rare disease and me: opinions from our youth community

For Rare Disease Day 2024, RARE Youth Revolution asked its followers to answer questions focused on life with a rare disease. Here are just some of the responses.

Raysa lives with Lupus, Sydney lives with chromosome 18q-proximal deletion, Chelsea lives with Lupus and Kati lives with Erb's palsy.

Two people holding hands

Q: Who inspires you in the rare disease space?

Raysa: Seeing how others are still able to achieve their goals even living with their conditions.

Sydney: Myself.

Chelsea: Everyone advocating for those of us with rare diseases, sharing their stories and showing how none of us are alone in this community, including patients, siblings and young carers.

Kati: The community and everyone’s stories.

Q: What are the everyday challenges you face?

Raysa: How to get past my daily struggles (brain fog, fatigue, strange new symptoms), while I’m still expected to function like a normal healthy person (at work, school and home). Lupus patients find it difficult to get any disability benefits because it isn’t something you can commonly see.

Sydney: One of the challenges I faced when I was younger was that I couldn’t walk or talk until I was four years old. I’ve also had 17 surgeries because of my condition, chromosome 18q-proximal deletion.

Chelsea: Difficulties in finding accommodations in social situations and accessibility in environments such as at the airport. It can be hard sometimes to explain to people how my Lupus impacts me as it is invisible, so people will only see me at my 'best' and not understand the harsh reality of it all.

Kati: The stigma and shame because I have a disability.

Q: How do you advocate for yourself?

Raysa: I’m open and transparent about my condition. I used to hide it and deal with it alone in college. Now I let coworkers and others know. So that when I have a flare onset, it’s not a surprise.

Sydney: I’m currently a Best Buddies ambassador for New York State and I have an Instagram account called @disabilitiesunite21 to bring people with different disabilities together, so they don’t feel isolated.

Chelsea: Writing and social media content.

Kati: I’m Finland's first international disabled model, I advocate for Erb's palsy and I want to be a role model for others, especially for young disabled people.

Q: What change do you want to see?

Raysa: Doctors should know more about rare conditions and the effects that can happen with that specific disease. A lot of aspects have gone undiagnosed for me because of the lack of knowledge from six different specialists and not sending me for the right exams.

Sydney: I want to change the way people think that disabilities aren’t always shown— they could be invisible.

Chelsea: The stigma around young people with rare diseases and what we can and can't do. It would be great if people did not make assumptions about this straight away just by knowing you're disabled and making judgements or taking pity on you.

Kati: Make disabilities a normal topic of conversation.


Would you be interested in writing about your experiences with rare disease? Email for more information


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