Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
I'm Avalon, a Dutch-Brazilian student of history and journalism. I adore the ocean, horses, dogs, writing, debating, books, music, swimming, cycling, film photography, mountains, cards and advocating for chronic and rare illness awareness and action.
I live with multiple rare, chronic and genetic illnesses, including Ehlers-Danlos syndrome and pure autonomic failure, alongside their comorbidities. I also live with the idea that “every cloud has a silver lining”. Relying on tubes, medication, surgeries and medical equipment to exist is by no means fun, but hasn’t made my life any less beautiful. My favourite mobility aid of all, though, has to be my service dog in training, Olive!
Combining my passions for advocacy and writing has been one of many silver linings of being so ill, and is a mission I hope to continue for a long time to come. I’m constantly seeking connections with other advocates to learn and build up our community, so please do reach out!
Your biggest motivation
Enjoying the silver linings in life and helping others enjoy them too, despite all the tough, ugly, painful moments and occurrences. From the slithers of sunshine through the ICU window, to my adorable service dog in training, to the deepest, most meaningful friendships that have blossomed due to meeting other chronically ill people - these things all make life so worth living, and I hope to help others realise this too!
Your greatest achievement
Perhaps my 'greatest achievement' should be something like speaking at a conference, or receiving some sort of award, or something else public. But truthfully, my biggest achievement feels like surviving and growing, learning and staying positive despite all the challenges.
I have no certificate, trophy or medal. But I have a vivacious, jolly spirit and look for the silver linings in everything that happens (without engaging in toxic positivity). It lives in me every day and is something no one can take away from me - not even rare, genetic, chronic illnesses that have nearly killed me.
What's next to strive for?
Completing training with my service dog in training, Olive!
Advice to other up-and-coming advocates
Two pieces of advice:
All advocacy work is valid—no matter how big or small, how public or behind-the-scenes. Every difference that you are able to make, and every person you reach, makes a difference. It's not all about social media shares or big public events. Even "just" chatting to a colleague about a mobility aid counts and can make a difference—you never know who they'll talk to. Your advocacy is valid!
Look after yourself, physically and mentally. Having a rare or chronic illness is already more than a full-time job! Prioritise your physical and mental well-being. Whether this means taking a few months out, cancelling events, or taking less on your plate: you come first! You are also not obliged to share everything about your illness or circumstances with anyone, including social media. I feel there is often some pressure to do so, but know that you have the agency to decide whether you feel comfortable doing so. Advocacy should be on your terms.
The tide will turn for the rare disease community when...
We are treated equitably in all walks of society.
Socials
Instagram: @loninamillion
Read the Women in RARE edition at https://bit.ly/WomenInRARE