Patient communities join forces to empower their youngest members and their carers
On September 14th, World Atopic Eczema Day, patient communities across the globe join forces to raise awareness on the psychosocial burden of children and youth living with Atopic Eczema. Atopic eczema (also known as atopic dermatitis (AD)) is one of the most prevalent skin diseases in the world. It is a non-communicable and chronic skin disease that usually develops during childhood. It affects body and mind of over 230 million people worldwide, whereby approximately 43 million are aged 1-4, which shows the startlingly high incidence in young children.
Often dismissed as “just a skin condition”, it requires instead a full multidisciplinary team to be properly managed, also to tackle stigmatization and its consequences on the most vulnerable. For this reason, the 2023 campaign is a global call for more attention and empathy towards those who live with atopic dermatitis every day, bringing to the center patients’ feelings and appealing to the audience sensitivity. A social media campaign will pivot on the hashtags #ifyouonlyknew and #AtopicEczemaDay, implying that there is an amount of invisible consequences regarding what happens in a patients’ life and in affected teens’ and their carers’ emotions.
Young patients from different countries have actually contributed in developing the messaging of the international campaign, providing their thoughts on their fears, concerns and desires for their life, also opening a route for the empowerment of their peers dealing with similar conditions.
EFA and GlobaSkin members have been encouraged to get involved in developing new messaging by asking young people to reflect and share their views on their daily experience living with atopic eczema and complete the sentence: If you only knew …
Healthcare professionals, health policy decision makers and all stakeholders are also invited to recognize, participate and take action to alleviate the burdens of atopic eczema on children and the youth.
Today, we draw attention to atopic eczema, a complex disease that has an immense burden on patients, especially the young ones and their caregivers. Globally, atopic eczema affects up to 20% of children and 10% of adults.
Patients with this disease spend most of their lives requiring comprehensive daily care and management. Caring for a child with atopic eczema can affect personal relationships, decrease psychosocial functioning, bring sleep loss for family members and a feeling of helplessness in dealing with the child’s daily suffering.
Everyone can join [Organization Name], GlobalSkin, EFA and the growing global community to empower young people with AE and encourage health systems to address the full range of atopic eczema’s impact. To be part of the online conversation on channels like Twitter, Facebook, Instagram and LinkedIn, use the hashtags: #ifyouonlyknew and #AtopicEczemaDay.
“As a global community, we mark September 14, as World Atopic Eczema Day. We unite to raise awareness for the disease and the impact it has on the millions of patients and caregivers worldwide. We recognize and validate the psychosocial burden atopic eczema can have on the youngest of people and how this multi-dimensional disease impacts their mental wellbeing and restricts their lives. We call upon healthcare professionals and policy makers to join us in our #IfYouOnlyKnew campaign and demonstrate how they support and care for atopic eczema patients all over the globe. Together we can make change happen.”
Jennifer Austin, Chief Executive Officer, GlobalSkin
“This World Atopic Eczema Day, we stand united for Europeans living with the disease. Although it is generally regarded as just ‘itchy skin,’ patients and carers know the burden extends well beyond, affecting their physical and mental wellbeing throughout their lives. We must act to raise awareness of the disease, to advocate for better care and increase the quality of life for the millions of people affected by this disease across Europe.”
Marcia Podestà, EFA President
About The Organisations:
International Alliance of Dermatology Patient Organizations (GlobalSkin)
GlobalSkin is a unique global alliance, committed to improving the lives of skin patients worldwide. With 220+ Members organizations globally, they nurture relationships with their membership, partners and all involved in healthcare—building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin has been working with the global Atopic Eczema Community to identify common issues related to atopic eczema, share information and insights, and work together to find solutions. Learn more at GlobalSkin.org
European Federation of Allergy and Airways Diseases Patients Associations (EFA)
The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is the voice of the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 45 national associations from 26 countries and channel their knowledge and demands to the European institutions. We connect European stakeholders to ignite change and bridge the policy gaps on allergy and airways diseases so that patients live uncompromised lives, have the right and access to the best quality care and a safe environment. Learn more at efanet.org.