Chiesi UK

04/11/2025

Ben Jeska was 28, working full-time in retail, and living a busy social life when his health suddenly deteriorated. Within days, he was in hospital and fighting for his life.

Ben was eventually diagnosed with the rare liver disease primary sclerosing cholangitis and placed on the liver transplant list. He received his life-saving transplant last year.

Throughout this tough time, Ben has often felt judged, with people questioning whether drugs or alcohol were the cause. These assumptions left him feeling unsupported and dismissed at a time when he needed people the most.

“Liver disease isn’t always caused by alcohol or drug use. Even if it is, those people still deserve help, not hate.”

His story highlights the importance of looking beyond assumptions.

https://www.chiesi.uk.com/look-beyond-the-bias



UK-CHI-2501008 | October 2025

31/10/2025

October has been about introducing ‘Look Beyond the Bias’ - raising awareness through powerful stories and insights from our UK survey on disease-related bias.

We’ve heard from Sue, Ben, Sara, Jacqueline and Patricia, who’ve all faced stigma and been labelled in different ways – Ben, for example, was wrongly labelled an “addict” due to assumptions about his liver transplant.

📢In November, we’ll take a deeper dive into these stories - because the burden of bias goes far beyond the visible.

Follow to hear more and join the conversation.

UK-CHI-2500925 | September 2025

29/10/2025

Patricia has lived with kidney disease for nearly 20 years. She has undergone dialysis, two transplants, and faced challenges including problems at work.

Despite worsening mobility, she felt she was labelled a “phony” and told she was “milking it”, facing stigma and lack of support that led to early medical retirement.

Patricia is speaking up as part of ‘Look Beyond the Bias’ to highlight how assumptions and bias can silence people, delay diagnosis, and leave some conditions overlooked.

“If my story makes just one person stop and think before making an assumption, then it’s worth it.”



UK-CHI-2500924 | September 2025

28/10/2025

What if wearing your favourite outfit could leave you with painful wounds?

Epidermolysis Bullosa (EB) is a rare and life-altering skin condition that can make even the softest fabrics a source of pain. For people living with EB every stitch, seam, and tag can tear fragile skin and lead to severe blistering.

This EB Awareness Week, we’re proud to support the Debra International “Inside Out” campaign - standing with the EB community and helping raise awareness for those whose everyday experiences are shaped by extraordinary resilience.



Symptoms of EB may vary. If you or someone you know may be affected, please consult a healthcare professional for appropriate advice.

UK-CHI-2500996 | October 2025

Video has been created and funded by Chiesi GRD.

24/10/2025

“They thought I was lazy.”

Jacqueline, from Wandsworth, lives with chronic obstructive pulmonary disease (COPD). Her symptoms began years before diagnosis, but because her condition isn’t visible, she feels her condition was often dismissed.

“People didn’t believe me when I told them. I’d be struggling to breathe, exhausted after the simplest things, but because I didn’t ‘look ill,’ they thought I was lazy and exaggerating.”

At the time, Jacqueline worked as a cashier, standing for long hours. She asked for a chair to ease her symptoms. Her employer refused. No adjustments. No support. Eventually, she had no choice but to leave.

In a Chiesi UK survey of over 1,000 people living with chronic or genetic health conditions, or who have experienced a premature birth, 43% said they’d experienced health bias in the workplace.

For Jacqueline, the biggest barrier wasn’t just the disease - it was the lack of understanding and support from those around her.



UK-CHI-2500863 | September 2025

21/10/2025

“People think I’m drunk.”

Sara, 63, from Devon, has lived with asthma since she was young and was later diagnosed with chronic obstructive pulmonary disease (COPD). Her breathlessness means she often has to force her words out quickly in one breath - which some mistake for shouting.

Instead of compassion, Sara has faced judgement. Struggling to breath and talk, people assume she’s drunk - avoiding her in the street, hanging up during calls, even shouting at her.

In a Chiesi UK survey of over 1,000 people living with chronic or genetic health conditions, or who have experienced a premature birth, 57% say fear of judgement has stopped them seeking support. For Sara, living with COPD is hard - but the bias she faces because of it is harder to live with.



UK-CHI-2500862 | September 2025

16/10/2025

“Am I incapable of being a mother?”

Sue, a mum of three from Nottinghamshire, faced judgement for having
premature births due to type 1 diabetes. Despite following medical advice, she often felt judgement from people in her life. She feels she’s been labelled as ‘weak’ for not being able to carry her babies to full term, as though her condition and choices made her a bad mother.

Sue’s story highlights how stigma can lead to shame, isolation and self-blame.



UK-CHI-2500860 | September 2025

14/10/2025

“People think I’m an addict.”

Ben, 32, from Leicester, was diagnosed with a rare autoimmune liver disease and received a life-saving transplant in April 2024. Despite his condition being unrelated to lifestyle, the stigma was immediate - even from those closest to him.

Assumptions about liver disease left Ben feeling dismissed and ashamed at a time he needed support most.

Ben is speaking up as part of ‘Look Beyond the Bias’ because he wants to be a voice for people who feel unable. Everyone, regardless of their background or circumstances deserves support.



UK-CHI-2500861 | September 2025

10/10/2025

World Mental Health Day is a moment to come together - to talk openly and remind one another that everyone’s mental health matters.

For some, added stigma can make talking even more difficult. In our recent survey of over 1,000 people with chronic or genetic health conditions, or who have experienced a premature birth, 71% said they have avoided being open about their condition, and 56% said stigma has affected their decision to speak up or advocate for themselves.

Look Beyond the Bias ambassador Dame Laura Kenny shares how assumptions can lead people to stay silent…



UK-CHI-2500857 | September 2025

09/10/2025

Look Beyond the Bias – the headlines

In our UK survey, 72% of people told us they feel guilt or unworthiness due to
their health condition. 79% said they’ve played down the impact their condition is having on them due to fear of judgement.

Over 1,000 people living with chronic or genetic conditions, including: asthma, chronic obstructive pulmonary disease (COPD), rare diseases, those who have undergone organ transplants and parents of children born prematurely shared how bias has affected them – and where this bias has come from.

Find out more https://www.chiesi.uk.com/look-beyond-the-bias



UK-CHI-2500923 | September 2025

Look Beyond the Bias is our commitment to challenging stigma, judgement and blame. Particularly for people with health conditions...

08/10/2025

“Drunk.” “Weak.” “Addict.”

These are the labels Sara, Sue and Ben told us they have lived with for a long time - not because it’s true, because of bias.

Sara has asthma and chronic obstructive pulmonary disease (COPD). When she’s breathless, people can misinterpret her behaviour as being rude or drunk.

Sue, a mother of three children born prematurely, was made to feel weak - as if not carrying to full term was some sort of personal failing.

Ben, a liver transplant recipient with a rare liver disease, has been wrongly labelled an addict – with people assuming his transplant is due to alcohol or drug abuse.

These aren’t isolated stories. They’re a reflection of a deeper problem.



UK-CHI-2500821 | September 2025