Before You Bloom

83 ~ Navigating Life with Neurofibromatosis Type 1, Spinal Injury, Scoliosis & Chronic Pain - Katie's Story


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I sit down with Katie, who has been living with Neurofibromatosis Type 1 (NF1), a rare genetic condition known for its tumor-growing tendencies. Diagnosed at a young age, Katie’s journey with chronic illness began at just four years old. By the time she was 12, her spine had crushed her spinal cord, leading to a life-altering spinal cord injury. Alongside NF1, Katie also manages Scoliosis, chronic pain, and fatigue, challenges that have shaped her life in profound ways.

We dive into Katie’s medical journey, from the surgeries and treatments she’s undergone to manage mobility and pain, to the therapies that have helped her navigate daily life. She shares the emotional and mental toll of living with chronic illness, how she has learned to advocate for herself within the medical system, and the evolution of her relationship with her body.

Katie also opens up about the feelings of being a burden that many with chronic illness experience, and how she counters these thoughts with self-love and self-care. Whether you’re facing a similar diagnosis or simply seeking insight into resilience and self-advocacy, Katie’s story is one of strength, perseverance, and hope!

Find Katie :Instagram


💗 Thank you so much for being here on this adventure with me! 💗- Hayley xo✨ Find us on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@beforeyoubloom⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

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The Before You Bloom Podcast is recorded on the lands of the Wurundjeri people of the Kulin Nation. I would like to recognise their continuing connection to land, water, and culture and pay my respects to their elders past, present, and emerging, and any Aboriginal and Torres Strait Islander people listening today.

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Before You BloomBy Hayley Kinneavy