Sarcoma UK has announced Miss Northern Ireland Carly Wilson as its newest ambassador, bringing a powerful voice to raising awareness about rare cancers after her own challenging journey with an ultra-rare sarcoma that was initially misdiagnosed.
The 23-year-old from Rathfriland will use her platform to raise awareness of sarcoma – a group of rare cancers that affect bones and soft tissues – after experiencing PAWS-GIST, an extremely rare subtype that primarily affects young people.
Carly’s appointment as ambassador comes just months after she was crowned Miss Northern Ireland, with a cancer check-up taking place just hours before the glittering ceremony where her crown symbolised not just beauty, but remarkable resilience in the face of a medical system that failed to recognise her condition.
A Journey Through Diagnosis
Carly’s ordeal began in 2023 when she was constantly exhausted and ‘as white as a ghost’. What followed was a frustrating journey through the healthcare system that saw her dismissed and misdiagnosed despite clear symptoms of serious illness.
Initially treated for blood loss with iron infusions and blood transfusions, Carly’s condition continued to deteriorate. Despite MRI scans, gastroscopies and multiple hospital visits, medical professionals repeatedly insisted she did not have cancer – even when she specifically requested consultation with cancer specialists.
The turning point came in September 2023 when surgeons at Belfast City Hospital successfully removed a 7cm tumour from her stomach, leaving her with just 15 per cent of the organ remaining. It was only when the tumour was analysed at the world-renowned Addenbrooke’s Hospital in Cambridge that the true diagnosis emerged: PAWS-GIST, an ultra-rare subtype of gastrointestinal stromal tumour.
‘The main thing that has to change is attitude; it’s not just a money issue. It is a support issue for staff and patients,’ Carly reflects on her experience. ‘Having cancer is hard enough but being told you don’t have cancer when you do is even harder.’
From Patient to Advocate
Now cancer-free and back pursuing her health physiology studies at Ulster University after taking a year out, Carly is determined to transform her traumatic experience into positive change. Her partnership with Sarcoma UK represents a natural alignment of her personal mission with the charity’s vital work in supporting patients and funding research into these rare cancers.
As Miss Northern Ireland, Carly will go forward to compete in Miss World, giving her an international platform to raise awareness about sarcoma and the challenges patients face in getting proper diagnosis and care.
‘I don’t believe cancer is a death sentence – if you are lucky enough, it can be a life sentence because it really does teach you how to live,’ Carly says, offering hope to others facing similar battles. ‘It teaches you how to cherish every single moment, never take a day for granted, and just push forward with absolute love in your heart.’
Her family, who were ‘stressed and overwhelmed’ during her medical struggles, are now thrilled to see her thriving and using her experience to help others navigate the complex world of rare cancer diagnosis and treatment.
‘We are thrilled to welcome Carly as our newest ambassador,’ said Richard Davidson, Chief Executive of Sarcoma UK. ‘Her story highlights the critical challenges patients face in getting proper diagnosis and treatment for these rare cancers. Last month, we observed Sarcoma Awareness Month, and we specifically focused our efforts on educating health professionals about the signs and symptoms of sarcoma, so that other young people like Carly can receive early and accurate diagnosis. Her determination to turn her experience into advocacy is extremely inspiring. Through her ambassadorship with Sarcoma UK, Carly Wilson represents not just the beauty and grace of Miss Northern Ireland, but the strength and determination of cancer survivors everywhere who choose to transform their experience into hope for others.’
