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SOS project of Institut Atopika

S – Support

O – Opening up on stigmatisation and discrimination

S – Social acceptance and inclusion

At Institute Atopica, we present the SOS project. The goal of the SOS project is to foster a wholesome approach to the problems if patients living with AD. With the project, we wish to draw attention to the fact that patients with AD and their parents are facing not only a difficult and underestimated condition but also, too often, stigmatisation, discrimination and marginalisation in public. The activities of the SOS project will be dedicated to tackling the psychosocial challenges faced by AD individuals day after day. We wish to bolster the patients so that they will find it easier to deal with the everyday challenges of living with AD.

Atopic dermatitis is not a contagious disease

Atopic dermatitis is exceedingly widespread, especially amongst children. It affects up to 30 % of children and 5–10 % of adults. Despite prevalence of the illness, the number of patients with AD is rising still. With the project, we wish to inform the public that atopic dermatitis isn’t a contagious disease and that AD patients shouldn’t be feared and avoided. It’s key that we address the parents of healthy children, who stop their child from playing with or touching a child suffering from atopic dermatitis.

Bullying

We will pay special attention to bullying that affects countless AD individuals because they look different and consequently have low self-esteem (how I see myself) and low self-respect (how I allow others to treat me).

In particular, we want to focus on AD individuals’ childhood experiences with peer bullying because they can have a profound negative effect on the mental health of the AD patients, who are already facing a daunting illness. It’s for this reason that we want to offer child and adult patients with AD the needed help and support for dealing with violence and preserving their wellbeing.

In comparison to patients with similar health issues, AD patients are underprivileged because policy makers don’t take AD seriously and don’t treat it as an immune system illness that can have a strong impact on the quality of the patients’ lives. Numbers speak for themselves; patients with atopic dermatitis had a 44% increased odds of suicidal ideation and a 36% increased odds of suicide attempts compared with patients without atopic dermatitis. 1

SOS project

The activities of the SOS project fall into the following three categories:

I) Providing professional support for patients with AD.

II) Educating the public on stigmatisation and discrimination.

III) Fostering social acceptance and inclusion of people with AD.

Professional support for patients with AD

At Institute Atopica, we will continue to provide you with all the needed support when it comes to skin care and lifestyle changes in the form of support groups, workshops and advice either on social media or in person. Soon, we hope to provide you with a new option – Consulting the doctor. On our web page, we will enable you to pose questions to a dermatology specialist on issues surrounding your illness. We are well aware of how having access to quick advice can ease our mind in times of personal crisis. In this way, we can reach out to risk groups of adult patients who have withdrawn from the healthcare system.

Collaboration with a psychologist

We are also happy to announce our collaboration with the psychologist Petra Brne. Petra has atopic dermatitis herself and will work with us on content that focuses on bullying. She will prepare useful advice on how to recognise bullying, confront it and deal with it. In addition, we will organise an online seminar for victims of bullying and parents/teachers who work with AD children and have experience with peer bullying. If you’re a victim of bullying or it’s your child who has been bullied, please share your story with us and ask us questions on our website. We will do our best to give you the needed support.

Disease awareness

Making the public aware of AD is our key activity because we want AD patients not to feel excluded from society and the public to able to overcome the stigma of AD being a contagious disease. In their daily life, patients still too often experience stigma due to the lack of knowledge on AD because people are afraid that the illness is contagious and behave accordingly. This can lead to the social isolation of the patient and leaves him or her with feelings of loneliness and inferiority and with a sense of being different to others. The patient can conclude that he or she isn’t accepted by others or that others don’t like the patient’s company and thus begins to avoid social interaction.   At the same time, the lack of knowledge on AD leads to the misunderstanding of the impact that this chronic illness exerts on all aspects of a patient’s life. Because of the scarcity of information and the absence of a wholesome understanding of the illness, others often underestimate how profoundly the illness can deteriorate the quality of life of an AD patient (e.g. “What’re you complaining about, it’s just your skin.”) Likewise, it can happen that the patient’s loved ones don’t understand the intensity of the illness’ symptoms. This is often revealed in the well-meaning but completely erroneous pieces of advice given to people with AD (e.g. “Don’t scratch, you’ll damage your skin.”)  
Research shows that informing and educating people about the impact of chronic illnesses can greatly influence the patients’ contentment in life, ways of coping with the illness and social support.
At Institute Atopika, we spread the awareness of AD at our yearly congress, by speaking about the illness in public and through other projects. With this purpose in mind, we have also announced our second literary and visual-arts contest this year. By participating in the contest, the patients can express their pain in the way that suits their wishes and talents most. Don’t forget, art has the potential to heal as well. Science proves that artistic expression helps reduce the levels of inflammatory molecules in the body. How will we use the contest submissions to inform the public about the illness? The submissions will be collected in a book that will serve as a gateway for physicians, teachers, friends and family members to enter the patients’ experiences. The goal of spreading awareness is also to stress that patients and their parents aren’t alone and that there are far too many people who suffer through this illness in solitude and isolation.

Fostering social acceptance and inclusion of people with AD

Because atopic dermatitis is a chronic disease, which means that patients have to live with it for the rest of their lives, it’s very important that they know their illness well and accept it in order to experience contentment and quality living. This is harder than it sounds. The skin is our place of contact with the world; it’s the first thing others notice about us. Patients with atopic dermatitis carry their biggest vulnerability on their sleeves and can’t hide it from others.

Acceptance of atopic dermatitis

One of the key processes that lead to the acceptance of AD is grieving. When a person is diagnosed with a chronic illness, this also means that his or her life will change in important ways. He or she will never be able to live like before. Each patient eventually experiences grief in the following stages:
  • denial (“It can’t be true. I don’t have atopic dermatitis; I’m not ill.”),
  • bargaining (“If I stick to the diet strictly, go see my dermatologist regularly and make lifestyle changes, the illness will go away.”),
  • anger, sadness and, finally, acceptance (“I have atopic dermatitis but I can lead a quality life regardless.”).
It’s important to stress that the grieving process is unique for each individual. At the same time, the stages in the process may not follow a particular order or may repeat themselves. Some stages can be experienced more intensely than others. It’s crucial that we allow ourselves to grieve because we can’t reach our goal of acceptance otherwise.

Social inclusion of patients with atopic dermatitis

Patients with AD often face social isolation due to the contagiousness stigma. As is the case with patients suffering from other chronic illnesses, AD patients need good social support, which is why promoting social acceptance is one of the major preventive actions that we can take in order to deal with the illness. We can distinguish between four aspects of social support that are different from each other but all indispensable for a patient with AD:
  • instrumental support (material support, e.g. helping with the costs of creams),
  • emotional support (expressing concern and affection, motivating and advising the patient),
  • informational support (providing important information on the illness in an accessible and clear manner),
  • companionship support (spending free time with patients and thus reducing the feelings of loneliness and isolation).
It’s equally important, however, that AD patients can be a source of support for others (i.e. reciprocity). This helps empower the patients, brings meaning to their lives and strengthens their social network and thus allows them to abandon the role of the victim that people with chronic illness can easily slip into.

Mental distress is easier to overcome together

The personal crises faced by people with severe AD due to social isolation and the inability to accept the illness are agonising. Data shows that such patients often suffer from mental health problems, especially (social) anxiety and depression. With depression, we have to pay special attention to suicidal ideation, as research shows that the probability of committing suicide is 36 % higher for patients with AD than it is for healthy individuals. Because of stigma, patients often slip into isolation. With different joint activities (in person and online, such as visiting the cinema, nature hiking, online meetings) we will engage the patients and empower them. We would also like to encourage the patients to engage with our institute. By meeting and working with others, patients will develop social skills, pick up new friends, explore healthy lifestyles and build up their social network and a sense of belonging.

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