Actress Zoe Colletti, star of Scary Stories to Tell in the Dark and Only Murders in the Building, recently visited Alder Hey Children’s Hospital to speak at a Hirschsprung’s disease information event organised by ILCaMS’ researcher Dr Rachel Hardwood.
Held ahead of this year’s Rare Disease Day (28 February), the event allowed children and young people with the disease, and their families, to learn more about Hirschsprung’s, the treatment and support available at Alder Hey, and the research taking place to understand the causes and potential treatments for the condition. It was also a great opportunity to connect with others affected by this condition.
Hirschsprung's disease is a birth defect of the intestines. It occurs when nerve cells in the wall of the intestine do not form properly, leading to an inability to defecate or pass stool. If left untreated, it can cause bowel obstruction and serious complications.
Dr Rachel Harwood, Academic Clinical Lecturer in the Department of Women’s and Children’s Health and honorary paediatric surgical registrar at Alder Hey, said: “Hirschsprung’s disease is a rare condition that affects around 1 in 5000 children who are born, which means in the UK we have around 170 children a year born with the condition.
“Our research aims to understand Hirschsprung’s Disease better so that we can develop smarter treatments which improve their outcomes and quality of life.”
Zoe Colletti, who also has Hirschsprung’s disease, acted as a roving reporter documenting the day and spoke about her own experiences in one of the sessions.
What is Hirschsprung's disease - With Zoe Colletti
More information on Hirschsprung’s disease and the treatment and support that Alder Hey can provide is available on their website.