Ipsos patient survey: Click here to share your journey with CSU

CSU, characterised by spontaneous hives, uncontrolled itching and unpredictable episodes of disfiguring swelling of the skin (angioedema) can significantly impact the quality of life of those affected, causing physical discomfort and emotional distress.¹ It is estimated that 1 in 100 people in Ireland suffer from CSU.^2,3 Many find relief with over-the-counter antihistamines when properly diagnosed. However, even with antihistamine treatment, the literature indicates that up to 9000 patients in Ireland could have uncontrolled symptoms.⁴ 

Striking portrait based on extensive Irish research, reveals the lived experience of Chronic Spontaneous Urticaria

On World Urticaria Day, Novartis was proud to be a part of the event “A Shared Canvas: The Untold Stories of Urticaria"  was unveiled at the Royal College of Physicians. This unique piece of art, developed through a partnership with an Irish researcher and artist, was created to increase awareness and understanding of Chronic Spontaneous Urticaria (CSU).

This isn't just any painting; it is a co-designed artwork by artist Valentina Vittorio, deeply informed by extensive Irish patient research conducted by PhD student Jennifer Donnelly from the RCSI. The research, based on in-depth patient interviews, uncovered the often-invisible psychosocial and emotional burdens of living with uncontrolled flares of hives, including profound loneliness, isolation, a devastating loss of identity, burning sensations and relentless sleep deprivation.

Jennifer Donnelly, PhD student, RCSI said:

"Chronic Spontaneous Urticaria is a condition under recognised in public discourse. Our research over the past few years has highlighted the raw, often hidden, emotional toll including the loneliness, the isolation, the burning sensation that goes beyond the skin" I had so many text documents of quotes and interviews, but it was Artist Valentina Vittorio who took on the task of translating these perspectives into her artwork.”

Valentina Vittorio, artist said:

“Turning the different experiences of individuals living with CSU into a visual form was really moving and challenging. The feedback from the patients was that I should focus on the themes of loneliness, isolation and that intense burning sensation. These were challenging to put into art, but it helped to have this input and direction. I aimed to create one portrait to represent all the different emotions and experiences. I hope it helps others better understand the unseen side of this condition."

Professor Niall Conlon, Consultant Clinical Immunologist, St James’s Hospital and Senior Clinical Lecturer, Trinity College Dublin said:

"The uncontrolled itch from CSU substantially impacts quality of life, disrupting sleep and interrupting daily activities. This condition disrupts relationships, sleep, work, school and mental wellbeing. Around the world, patients often feel unable to participate fully in society due to the unpredictability and discomfort of urticaria. It is not only a medical issue but a significant barrier to living a full and confident life. The global burden of this disease must be recognised and addressed with urgency.”

#UntoldStoriesOfUrticaria. #ASharedCanvas #ChronicSpontaneousUrticaria #UDAYYourJourney #UnmetNeedInHives #UDAY2025 #CSU