Voices of Vasculitis
Vasculitis Journey is a living collection of personal experiences that tell the health and mental health impacts of vasculitis while providing hope and inspiration for all individuals fighting this disease. If you have Vasculitis or been touched by this disease and would like to share your journey with us, please connect with us.
Living with a chronic illness can be taxing for the individuals, their family/caretaker and medical team. People often live with a perverse relation to illness. Often they avoid speaking about the disease in an effort to prevent awkward or tense moment. However, avoiding the topic does not mean that it is not having an impact on your life, as well as that of your family and friends. Most patients and their family have a narrative, thus, it is important for patients with vasculitis, as well as their family and care team to be able to find ways to give voice to their suffering, to find a way to write about vasculitis or articulate what they endure and how they work through their difficulties and losses, hopes and fears. In doing so, patients are better able to create awareness of vasculitis, share their experiences with others and open up about learning from others.
Talk to us about your journey with vasculitis. Write about your losses and grief, emotions, challenges and more generally how you cope. Write a poem, an essay, a drawing—just share your experience in a way that you feel moved.
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Need help on what to write? Consider the questions below as you think of what you want to share.
- How long did it take to get a vasculitis diagnosis and what were your initial symptoms?
- What are your current symptoms and what would you like others to know about vasculitis?
- How has vasculitis impacted your daily life and future?
- What has helped you manage vasculitis and have you engaged with any resources or programs?
- What gives you hope?
- How have you coped and managed your emotions?
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Your Journey Matters!
Below is a guide to help you in submitting your journey.
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Alternatively, you can email us by clicking the link here. Send a maximum of a two page document outlining your journey or just inquiry about how you can do so.