Atopic dermatitis is a very unpleasant illness that can have an huge impact on the lives of the patients and their families. The purpose behind the project ‘Agents of Change’ AD Challenge is to bring the AD community in contact with the innovators in health care and people who work as partners for advocate groups and other nonprofit organisations all around the world and introduce ideas that would make important changes in the everyday life of people with atopic dermatitis (AD).
‘Agents of Change’ Atopic Dermatitis Challenge
In 2019, ‘Agents of Change’ AD Challenge focussed on confronting the unacceptable and sometimes overlooked bullying and stigmatisation faced by adult and teenage patients with AD.
By participating in this project, we hope to encourage initiatives that would enable the atopic dermatitis community to discuss their illness openly and become more confident in managing the physical, emotional and social burdens of living with AD.
The visible symptoms of the illness, such as skin lesions, dry, cracked, darkened and weeping skin, scabs and rashes, can have a significant impact on the emotional and psychosocial life of atopic dermatitis patients. The stigma that accompanies these symptoms can lead to bullying which is often rooted in the lack of knowledge about the illness.
Through ‘Agents of Change’ AD Challenge, the pharmaceutical companies Sanofi Genzyme and Regeneron want to draw attention to the emotional and social burdens that arise as a result of bullying and attempt to find ways to bolster the AD community. Amongst the many projects that were submitted for the Challenge all over the world, five were selected and given financial support.
Institute Atopika with its seat in Maribor, Slovenia, was one of them. The idea to tackle the bullying problem was to organise the National and International Literary and Visual Arts Contest for Patients Suffering with Atopic Dermatitis.
International and National Literary/ Visual Arts Contest for Patients Suffering with Atopic Dermatitis
Institute Atopika is a non-governmental, non-profit organisation that works to improve the quality of life of atopic dermatitis patients and their loved ones.
The goal of Institute Atopika is to use the national and international art contest to harness the power of creativity and expose the physical and psychological violence that affects numerous AD patients throughout the world. We invite children, teenagers and adults with AD as well as anyone who has ever bullied a person with AD to share their artworks with us and contribute to our little gallery collection themed “My Skin, My Pain”. The goals of the contest are education, support and the encouragement of empathy towards atopic dermatitis patients. The best contributions selected by our committee in each category will be presented in a short video, which will be posted on social media and in an online library.
With a personal approach to exposing the emotional burden carried by people with AD, Institute Atopika wishes to build a more emphatic world for those affected by the illness.
The other four ingenious projects that were also selected for financing through the ‘Agents of Change’ AD Challenge come from all over the world. Below, we present their ideas on how to help AD patients in their everyday struggle with the illness.
Youth-Led Education and Awareness Campaign was launched by the organisation Global Parents for Eczema Research (GPER), which is a network of parents who work to raise the quality of life of children with AD through research and innovation. To combat the bullying of AD patients, GPER suggested the launching of a campaign to spread the awareness about AD on the popular communications platforms used by teenagers, such as Snapchat and TikTok, and other social media. GPER hopes that the campaign will encourage other teenagers who live with AD to share their story and boost the confidence and leadership skills of teenagers taking part in the campaign.
The Diana Award with its seat in London, UK, is a leading non-profit organisation that bases its work on the conviction of Princess Diana that young people have the potential to change the world. With an established programme to tackle bullying, the organisation teaches children and teenagers, school workers and parents on how to curb all types of harmful behaviour in schools, communities and online.
Their proposal to stop the bullying of people with AD involves developing the ability to recognise this type of harmful behaviour and training the AD youth to become “ambassadors against violence.” The training will take place in up to ten selected schools and will foster a better understanding of AD patients and their acceptance in schools, communities and online. The Diana Award hopes that this peer programme will help understand how some people can be different from others and what challenges patients with AD face in their everyday lives.
JAMII LIGHT UP is a non-profit organisation with its seat in Monduli, Tanzania, whose mission is to ensure education and financial and emotional support for people with AD, their families and loved ones.
The organisation strives to introduce screening programmes for children with AD in the existing immunology departments in the local communities, which will help ensure proper training and support for families affected by skin diseases. The organisation JAMII LIGHT UP will work with parents especially for the purpose of developing the AD tools, which will be used in groups established exclusively for family support and will contribute to the better understanding of AD and prevent stigmatisation from the society. The groups for family support will also maintain a forum where parents will be able to meet and discuss and share their experiences of life and care for children with AD.
JAMII LIGHT UP hopes that their initiatives will build a network of support for the local AD community and inspire other regions to engage in similar activities.
Eczema SUPPORT Australia (ESA), a charity organisation for eczema patients with its seat in Gold Coast, Australia, enables support and connection for Australians whose quality of life has been greatly diminished due to atopic dermatitis and allergies.
ESA will work to encourage the understanding of those living with AD who have been affected by the illness. They will create video series entitled “Life Stories” that will portray the experience of adolescents with AD. ESA’s goal is to share these stories with the local and international media to draw attention to the bullying faced by AD patients and spark an interest in this problem also in the public media.
By presenting the patients’ stories about the impacts of AD on their life, ESA wishes to raise the awareness of the general public and offer additional support to the AD community, which will bolster the role of AD patients in the society, reduce bullying and increase the quality of life.
The steering committee of ‘Agents of Change’ AD Challenge received numerous great projects from all over the world and selected five that received financial aid.
Two members of the committee are also:
Navdeep is a user-focused product leader in the healthcare technology space, based in the San Francisco area. After her son received a severe eczema diagnosis, Navdeep developed Eczema Tracker, a free solution to help patients track and manage their eczema symptoms. Navdeep also runs a lifestyle blog called “Eczema Living”, where she discusses her role as a mother to a son with eczema and provides support and advice to those facing a similar situation.
Africa Luca de Tena Smith
Africa is the Director of Communication for the Association of People Affected by Atopic Dermatitis (AADA) in Spain, a non-profit patient organization with the aim of improving the quality of life for people affected by AD. Based in Madrid, Africa has lived with severe AD for most of her life. She is also an actress, comedian and founder of Afri’s Cookies