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Stories from our community
Stories from our community
From patient to paramedic – Maria’s story
Maria’s story of resilience with undiagnosed adrenal crisises
‘I have become a zebra with too many stripes’ – Tilly Rose’s story for Rare Disease Day 2026
Francesca’s story: A three-year undiagnosed rollercoaster
Resilience, self-advocacy and hope: Liv’s story
What life looks like now that I’ve stopped working
Defying expectations and shaping your own experience: Aleha’s story
What we’ve learnt from parenting a child with a pituitary condition
When the Treatment Becomes the Problem: Imali’s Cushing’s Syndrome Story
School, netball and a pituitary tumour – Tessa’s story of a childhood craniopharyngioma
Pushing for a diagnosis – Sophie’s rare disease story
How a thunderclap headache changed my life – Emily’s story
Running for rare disease awareness: Jerome’s story
Rare Disease Day 2025: Gail’s story
Sam’s story: waiting years for an acromegaly diagnosis
Trevor’s story- Successfully removing a pituitary tumour
How my fertility issues led to a pituitary adenoma diagnosis
Risa’s story: Living life to its fullest with Acromegaly
Mark’s story: Life after undergoing a craniotomy at 14
Edy’s story: Seeing clearly again after a non-functioning adenoma
Serena’s story: Surgery for prolactinoma
Peter’s story- 50 years anniversary of a pituitary condition
Steven’ story: A Cushing’s diagnosis after unexplained weight gain
Amy’s story: The first person with Type 1 Diabetes and AVP-Deficiency to hike Mt. Kilimanjaro
Nadine’s story: Living with a physical disability and Cushing’s disease