Urgent call to ‘make lupus visible’ as new research shows the impact the autoimmune disease has on patients’ lives

• Research shows more than 70% of those living with lupus in Ireland report condition negatively impacts their ability to work full-time, with significant numbers reporting negative mental health effects. [1]
• No new treatments have been made available for patients in more than 20 years for this disease, which disproportionately affects women of childbearing age

Arthritis Ireland and AstraZeneca Ireland have come together this World Lupus Day to call for people living with lupus to share their stories to increase visibility of the autoimmune condition and its impact on patients.

Lupus, also known as Systematic Lupus Erythematosus (SLE), is a complex autoimmune disease that is experienced differently by each person and causes a variety of symptoms, including skin rash, joint pain, swelling and fevers.[2]  It is an often under recognised condition that can take many years to be diagnosed[3] and disproportionately affects women within the 15–45-year-old age cohort.[4]

Arthritis Ireland conducted a new survey to understand the impact of the condition and to know more about the day-to-day problems that affect those living with the disease. 90% of those surveyed indicated that lupus negatively impacts physical activity and their ability to exercise. 69% said lupus negatively impacts their family life and over 70% of those surveyed reported that the condition negatively impacts on their career, with many having to take prolonged time off work. Respondents also indicated a negative impact on their mental health due to their disease with anxiety (57%), loneliness (45%) and depression (36%) featuring strongly. (refer to reference 1)

As part of their joint initiative, Arthritis Ireland and AstraZeneca Ireland are calling on people living with the condition or who have family with the condition to share their stories online using the hashtag #makelupusvisible.

Sharing her story to raise awareness on World Lupus Day is mother of two, Ruth Levins, who described the impact Lupus has on her life, and the life of her family.

“I started feeling unwell at 16, it took two years of tests, different doctors and a lot of perseverance to get a diagnosis. Although it can be challenging, I have never let it hold me back. I don’t let Lupus define who I am or how I live. As a full-time working mum of two young kids, life is busy. I try to prioritise sleep as much as I can in order to limit flare ups. Over the years, I’ve learnt that lack of sleep and stress are two major contributors to my lupus flaring up. I’m lucky that my lupus is well managed with the right medication for me and a wonderful medical team in Beaumont. I hope that by sharing my story this World Lupus Day, it will help more people in Ireland identify their symptoms, allowing them to get an early diagnosis and the right treatment.”

Commenting on the results of this survey, Arthritis Ireland chief executive Gráinne O’Leary said,

“The results of this Arthritis Ireland survey clearly indicate the huge impact lupus has on the day-to-day lives of those living with the disease. As lupus predominately affects women between the ages of 15 and 45, it can have a significant impact on fertility and on family life in general. There is a financial burden as well with many patients having to take time off work. At Arthritis Ireland, we provide support and resources for those living with lupus and through this campaign are aiming to increase awareness of the condition amongst the general public.”

In Ireland, Lupus is recognised as a relatively uncommon condition, but its exact prevalence is difficult to determine due to the complexity of its diagnosis, variability of its symptoms, and lack of official data on prevalence. There is also a large unmet need in relation to effective and targeted treatments for lupus.

Speaking to the difficulties of diagnosing lupus and the lack of dedicated treatments, Professor Gráinne Murphy, Consultant Rheumatologist from Cork University Hospital said,

“Lupus remains a challenging diagnosis to treat. While there have been significant therapeutic advances in many other immune-mediated conditions, there have been many disappointments in clinical trials for SLE. In more recent times, reassuringly, there have been some positive developments in clinical research which have led to the development of a limited number of new therapies. Unfortunately, these agents are not yet widely available and equity of access remains an issue. There remains a significant need for more effective treatment options.”

Commenting on the launch of this campaign, Alex Wilkes, Country President, AstraZeneca Ireland, Commercial Operations said,

“As we mark World Lupus Day, it is important to come together to raise awareness and understanding of this complex autoimmune disease. By sharing the stories of those living with lupus, we hope to bring better visibility to this often under recognised condition. At AstraZeneca, we are committed to supporting individuals living with lupus and we continue to advance research and innovation to improve the lives of those affected.”

For more information, please visit: Lupus | Arthritis Ireland  or call the Arthritis Ireland support call 0818 252 846 or email helpline@arthritisireland.ie. 

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