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Shrinking the Silence

Sharing a voice on living with rare disease

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I’m a big believer in the natural power of dressing the opposite of how you feel. Today I am dressing bright because I’m feeling fatigued, worn out by the hot weather, stressed at work and just need an extra ‘you can do this!’ 👊👊 #chronicillness #invisibleillness #desmoidtumor #nocolonstillrollin
My positive experience of being a young patient is a topic I’ve wanted to write about for a while, and finally got my thoughts down (link in bio). Strangely enough whilst still under the influence of general anaesthesia yesterday 🤔 #youngandsick #empoweredpatient #familialadenomatouspolyposis #desmoidtumor
New blog up: the aftermath of surgery and chemo has taken a toll on my body and I’m learning to accept that - link in bio #chemo #familialadenomatouspolyposis #desmoidtumor #nocolonstillrollin #chronicillness
April hair, overgrown stage of growing it out but perfect for twists and braids 🌈 #chemo #chemohair #desmoidtumor #familialadenomatouspolyposis

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ampulla breakup cancer Chemo chronic illness Desmoid tumour empowered Familial adenomatous polyposis family FAP hair hair growth Hair loss Ileostomy invisible illness J-Pouch nurses oncology pixie cut polyps Proctocolectomy Rare Disease Rare Disease Day relationship Relationships scars surgery travel Wig work young patient

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