Last September 14th the atopic eczema patient community belonging to EFA’s Members marked the first ever European Atopic Eczema Awareness Day to inform and bring attention to this allergic disease that affects 20% on children and 3% of adults in Europe. For this very especial occasion, the EFA team travelled to Paris to launch the day during the European Academy of Dermatology and Venerology (EADV) annual Congress, where we held an event presenting the results of the biggest ever survey on the quality of life of atopic eczema patients in Europe, and a photo exhibition to show the reality of patients living with this disease across the continent.
An event to highlight the silent suffering of atopic eczema patients
Atopic eczema was one of the key topics discussed during the 27th EADV Congress because it is one of the main reasons for consultation among dermatologists. EFA could confirm the interest of the EADV community to advance knowledge about this disease with a full room in our Meet-The-Expert event on September 13th.
During the event we were honoured to count with the key opinion of EADV President Elect Dr. Carle Paul, as well as the two experts that guided EFA in the quality of life survey Prof Johannes Ring as medical advisor and Mr Bernd Arents as expert patient. They explained why EFA decided to develop a new quality of life questionnaire to measure the Atopic Eczema Score of Emotional Consequences (AESEC) and why the results of the biggest ever survey on quality of life with atopic eczema in Europe can be seen as milestone to change the perception that the medical community and general opinion have about atopic eczema.
After the presentations, a panel composed by Mr (Dermatologist) Ms Alice Visintin (Italian patient leader) and moderated by Carla Jones (EFA Secretary to the Board) discussed the effects of atopic eczema in people’s lives and how patients will deal with their atopic eczema depending on their life situation.
Presentations are available here:
- Atopic eczema: burden of disease and individual suffering – Results from the EFA Atopic Eczema Survey
- The silent suffering of patients
The Itching for Life report is available in 9 languages here.
Atopic eczema patients were more prominent in this EADV Congress
As initiators of the European Atopic Eczema Awareness Day, EFA was offered the opportunity to host a photo tour in a stand at the Industry floor.
The ‘Atopical Lives’ exhibition features real patients in their real-lives with atopic eczema and was presented by Lurdes R. Basolí, the photo artist who met 13 patients from Czech Republic, France, Italy, the Netherlands and Spain. EFA deeply thanks all the volunteer patients involved in this photo project, for their courage facing atopic eczema everyday and their generosity sharing their daily ‘atopical lives’ to show other patients that they are not alone.
In addition to the stand, EFA was also present in the Patient Village, where we had the chance to discuss with other skin patient patients associations from around the world and reinforce our links. We regret however the isolation of the Patient Village, which was completely out of the way towards the scientific sessions and industry exhibition and therefore difficult to reach by healthcare professionals. We hope in next EADV Congress editions patients associations would be granted a better spot to allow real partnership and discussions in which both healthcare professionals and patient representatives are partnering in.
The Itching for Life report beyond EADV
EFA’s Quality of Life report was also featured in key discussion during and after the EADV Congress such as the:
- ‘Supporting your patients beyond skin: The psychosocial impact of dermatological diseases on patients’, an event organised by the International Association of Dermatological Patients Associations (IADPO) together with EADV where EFA Director Susanna Palkonen had the opportunity to present EFA’s Patient Reported Outcome Measurement (PROM), the Atopic Eczema Score of Emotional Consequences (AESEC), and the results of our survey.
- ‘Rethinking healthcare systems in Europe: how to incorporate patients perspective’ an event organised by the Permanent Representation of Denmark to the European Union, where EFA Director of Policy and Communications Isabel Proaño had the opportunity to present the tangible results of the AESEC questionnaires and how medical research and care should also be driven by the patient experience and the impact disease has on their quality of life.
In addition, many EU media covered the event:
- Atopic eczema patients want more understanding (EUObserver)
- Biggest-ever study on eczema in Europe urges need for further research (EurActiv)
- Prevention and Care: European Atopic Eczema Awareness Day 14 September 2018 (Parliament Magazine)
- People living with atopic eczema (Open Access Government)