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Mental health issues and social isolation revealed as hallmarks of severe Atopic Dermatitis - 11 June 2018

Almost half of participants in a new study living with severe (46%) atopic dermatitis experience low self-esteem and confidence leading to increased social isolation1

New research has put the spotlight on atopic dermatitis revealing the devastating and wide-reaching impacts the disease can have on people’s lives, with it affecting mental health, sleep and relationships.1

Allergy & Anaphylaxis Australia (A&AA) is today calling on all Australians to understand the disease’s true burden.

Atopic dermatitis (AD), also known as eczema, is a chronic inflammatory disease of the skin. While many know that it is characterised by inflamed skin, intense itching and weeping skin lesions3, which is driven in part by a malfunction in the immune system, very few understand the broader impact it can have on people’s lives.

Maria Said, CEO of A&AA said AD is more than just a skin condition. “Atopic Dermatitis is a chronic disease that can have a significant psychosocial impact on those affected,” she said.

“At A&AA we work with people who are sometimes living with the most severe forms of the disease and we know first-hand how devastating the impact can be and how despondent people are.”

“From depression and anxiety to social isolation, the inability to sleep and therefore work and a struggle to maintain lasting relationships are real for some. It’s important that the realities of these challenges are understood by the medical community, workplaces and all in the Australian community.”

24-year-old Tamara has lived with severe AD for most of her life. Not only is the condition severely painful, it has also impacted Tamara’s work, sleep and self-esteem.

“It’s (atopic dermatitis) not just on the surface. It impacts your mental health, concentration, your energy. It impacts every aspect of your life.”

“I’ve had the condition for over 20 years and treatment options have stayed the same. I’m managing the symptoms, but the same options are being offered to me now as back when I was four years old,” said Tamara.

In an Australian first, the Atopic Dermatitis Australian Patient, Experience, Expectations and Knowledge (PEEK) Study released by the International Centre for Community Driven Research (ICCDR), has uncovered the physical and psychological impacts of AD.

Insights from the PEEK Study tell us that; 

  • More than half of all participants living with severe (53%) and very severe AD (54%) said clinicians tell them “there is nothing we can do”1

  • Nearly half of all participants living with severe (46%) and very severe (40%) AD have significantly impacted quality of life in relation to self-esteem and confidence, leading to social isolation1  

  • 36% of all participants living with severe and nearly half of those (45%) with very severe AD experience significant impact on family relationships and intimacy with a partner1  

  • 85% of all participants with severe and 95% with very severe AD experienced physical symptoms causing regular sleep disturbance1

Associate Professor Saxon Smith, Dermatologist, says the compounding challenge for people living with the disease is that current treatment regimens can also impact their quality of life. 

“’There’s no doubt that, for those who are living with severe forms of the disease, AD can take over people’s lives,” he said.

“For many people living with AD, daily treatment options that most of us would consider an impossible challenge can become part of their regular routine.”

“Some people have to have diluted bleach baths, or do wet bandage dressings just to find short term relief from the physical symptoms of the disease.”

“These are some of the options that people living with AD employ. The fact that in many instances these options are only moderately effective makes it so much worse.”

Nearly all (90%) of those of all participants in the PEEK Study with very severe AD say there are no or limited treatment options for them.1 

Three key areas were identified in the PEEK Study to further support those living with AD, include the need for; 1

  • treatments that offer a more holistic approach, that and are safe and are not detrimental to long-term health,

  • interventions to address the psychological impact of AD, including the increased alienation from society,

  • initiatives that encourage coordinated and multidisciplinary care to empower those living with AD to proactively manage their condition.

Ms Said says the recommendations are a step in the right direction for this community.

“The nature of AD can keep those living with the most severe forms in social isolation. The message from A&AA to those feeling isolated by the condition is to reach out and talk to their healthcare professionals openly about how AD is affecting their life. We want people to know that they’re not alone and that we can help navigate the way to accurate diagnosis, optimal treatment and ongoing management,” Ms Said says. 

A&AA has support networks and resources available on their website for people wanting to better understand their condition and seek help.2 A&AA also has a helpline available for people with AD who need information and support. 

References 

  1. ICCDR. 2018. Atopic Dermatitis Australian Study. PEEK. 1:4.

  2. Allergy & Anaphylaxis Australia. Eczema Atopic Dermatitis. Available online: https://allergyfacts.org.au/allergy-anaphylaxis/eczema-atopic-dermatitis [Last accessed 8 June 2018] 

  3. Boguniewicz, M. (2017). Biologic Therapy for Atopic Dermatitis: Moving Beyond the Practice Parameter and Guidelines. The Journal of Allergy and Clinical Immunology: In Practice, 5(6), pp.1477-1487. 

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