Stories

For World Urticaria Day on 1 October, Novartis Ireland is sharing early findings from an ongoing survey of people living with Chronic Spontaneous Urticaria (CSU) in Ireland.

Chronic Spontaneous Urticaria (CSU), also known as chronic hives, is a long-term condition that causes recurring itching, hives and swelling without a known external trigger. CSU affects more than the skin: it can disrupt sleep, wellbeing, work, family life and social activities.

The 2026 World Urticaria Day theme, “Take Back Control – From Itch to Understanding”, calls for greater recognition of the lived experience of urticaria and the importance of listening to patients. Interim findings from an ongoing survey in Ireland provide an early picture of how CSU affects patients’ daily lives, work and use of healthcare services.

How does CSU affect work and healthcare services in Ireland?

CSU affects people’s ability to work: 41% of respondents have taken time off because of the condition. Among those affected, the average time missed is 16 working days per year, demonstrating the substantial impact of CSU on employment and productivity.

CSU also places a significant burden on healthcare services. More than half of respondents (54%) have attended an Emergency Department because of CSU, while 64% receive most of their care through the public hospital system. In addition, 31% of patients need specialist appointments two to three times each year, reflecting the condition’s ongoing healthcare burden.

On reviewing results, Dr Niall Conlon, Consultant Immunologist, St. James's Hospital and Trinity College Dublin, commented:

“These interim findings highlight that CSU is far more than an intermittent skin condition. The high levels of itching, fatigue and sleep disturbance reported by patients can have a profound effect on day-to-day functioning, wellbeing and productivity. It is particularly striking that over a third of respondents are not fully satisfied with their current treatment, reinforcing the need to continue improving care and outcomes for people living with CSU. We need to do better. I encourage people living with this significant disorder to take part in the survey so that we can build a clearer understanding of their experiences and unmet needs”

What is the biggest unmet need for people living with CSU?

Incomplete symptom control is the biggest unmet need for people living with Chronic Spontaneous Urticaria. Among respondents who are not satisfied with their treatment, almost half (47%) say it provides only partial relief, 40% report no meaningful symptom relief, and one-third say their treatment does not improve their quality of life.

How does Chronic Spontaneous Urticaria affect daily life?

CSU is much more than a skin condition. Based on 39 responses collected so far, the provisional results show that 74% of respondents say CSU has a significant or severe impact on their daily lives. The most commonly reported symptoms are itching and discomfort (82%), hives or wheals (79%), fatigue and exhaustion (67%), sleep problems (54%), and angioedema—swelling beneath the skin—(49%).

The interim Irish survey findings also show a substantial emotional and practical burden. Six in ten respondents (61%) report a major impact on their mental and emotional wellbeing. More than half (54%) report a major impact on work or education, family responsibilities, and social life. In addition, 38% avoid social activities and 31% say they struggle to maintain social contact.

How long does it take to receive a CSU diagnosis in Ireland?

For many survey participants, the journey to a confirmed CSU diagnosis is long. Respondents report an average of 39 months from first symptoms to diagnosis and 19 months from first seeking medical help to receiving a confirmed diagnosis. Almost half (49%) say they were initially told they had an allergy, and respondents saw an average of four doctors before their diagnosis was confirmed.

Who can take part in the Irish chronic urticaria survey?

The Irish chronic urticaria survey remains open and adults aged 18 or over who have received a diagnosis of Chronic Spontaneous Urticaria (CSU) or Chronic Inducible Urticaria (CIndU) are invited to take part. The survey takes approximately 15 minutes, and results will be reported in anonymised, aggregated form.