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Raimy-Rose Lewis (she/her)

Chronic Illness & Disability


Place of Birth: Australia
Current location: Brisbane, Queensland, Australia
Age: 24 years old
Language/s: English only
NDIS Participant: No
Diagnoses: Hypermobile Ehlers-Danlos Syndrome, Asthma
Healthcare Access: Primary Health Care, Allied Health, Mental Health, Secondary and Tertiary care


Raimy-Rose epitomises self-advocacy in healthcare, born with Hypermobile Ehlers-Danlos Syndrome (EDS), yet only diagnosed at 22 years of age after years of challenging symptoms and navigating a diverse range of specialists. Raimy had to engage in extensive research about her rare condition, before presenting her findings to her doctor - resulting in confirmation of her suspected and researched diagnosis. From this experience, Raimy understands the importance of diagnosis and the impact that can have on medical care, but also identity. After being diagnosed, she finally felt validated, was able to understand that she had a right to consider herself a member of the chronic illness and disability community, and therefore access the supports she needed to improve her quality of life. Raimy is passionate about making this process easier for others, and improving the awareness around invisible disabilities, chronic illnesses and more specifically EDS. Connecting with community, like-minded organisations and businesses to raise awareness and create an impact for others with dynamic and invisible disabilities in particular, is a key motivation of Raimy's lived experience work. Raimy wishes to dive into whatever opportunities can evolve from her extensive lived experience of the healthcare system and strengthen support for others navigating life with the intricacies presented by a dynamic disability, who may not identify with that 'label'.




  • Published Writer

  • Speaker Brisbane Disability Expo October 2022

  • Contributed to co-design development of MRFF Research Grant

  • Participated in filming Queensland Health National Pain Week video on Chronic Pain for young people

  • Bachelors Degree in Creative Industries (Media and Communication)

  • Former content writer and social media manager

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