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Shrinking the Silence

Sharing a voice on living with rare disease

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Usually my view from hospital is a car park ✨🌿 #nocolonstillrollin #dehydration #chronicillness #familialadenomatouspolyposis
Problems when you have short hair and too much of it 🙃🙃#chemohair #chemo #shorthairdontcare
Love working and lunching with @vicff4129 #blueskies #positivevibes
Last week was #never2young awareness week, and just through seeing all the stories people shared I realise how lucky I am that my polyps were discovered in time, how lucky I am that I’m not facing a terminal diagnosis that many others have. I have a rare genetic condition that predisposes me to lots of different cancers on top of bowel, but getting my diagnosis in time means I now get the monitoring I need before it’s a problem. But as young people we shouldn’t have to rely on luck when it comes to our health, getting a diagnosis and ultimately our lives. Years down the track I still feel a lot of anger towards how long it took to be listened to, because as I connect with more people on social media I am becoming more aware of what other people have gone through and I know that was so so close to being my story. Really thankful for the work @bowelcanceraustralia does to raise awareness.

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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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