How living with lupus impacts careers negatively

by Rachel Cunningham
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Over 70 per cent of people living with lupus have said that the autoimmune condition  negatively impacts their career, a new survey by Arthritis Ireland has found.

This research, which aims to understand the day-to-day problems that affect those living with the disease, was shared last Friday, May 10, as part of World Lupus Day.

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. 

In Ireland, it is considered 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. 

Ninety per cent of those surveyed indicated that lupus negatively impacts physical activity and their ability to exercise.

Respondents said lupus negatively impacts their family life and also indicated a negative impact on their mental health due to their disease with anxiety, loneliness and depression featuring strongly. 

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

“I started feeling unwell at 16, it took two years of tests, different doctors and a lot of perseverance to get a diagnosis,” said mother of two, Ruth Levins.

“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.”

“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,” said Arthritis Ireland chief executive Gráinne O’Leary.

“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.”

Professor Gráinne Murphy, Consultant Rheumatologist from Cork University Hospital highlighted the challenges associated with treating the disease.

“Lupus remains a challenging diagnosis to treat,” she said.

“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.” 

For more information, please visit: Lupus | Arthritis Ireland  or call the Arthritis Ireland support call 0818 252 846 or email [email protected]

Featured Image: Pictured in the gardens of Malahide Castle is Ruth Levins who lives with lupus and Arthritis Ireland chief executive Gráinne O’Leary.

Picture: Damien Eagers / Julien Behal Photography

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