The first World Atopic Dermatitis Day is being held today, with the goal of providing a platform for patients, caregivers, and their loved ones. The global initiative aims to further understanding about the true burden of atopic dermatitis (AD) and raise awareness about the issues faced by the AD community.
Non-profit organizations such as the Ottawa-based International Alliance of Dermatology Patient Organizations (IADPO) are taking part in the event. IADPO has released an online questionnaire on their new interactive online community AltogetherEczema. The survey aims to identify issues that have the most impact on AD patients. IADPO created the novel online platform with the goal of engaging individuals, groups, and organizations around collective action for change—providing a space to share stories and amplify what people living with this disease most want to change.
They also aim to help connect patients and caregivers with their local patient associations. A directory of recommended patient associations, organized by country, can be found on the AltogetherEczema website. Updates on the latest AD clinical trials, treatment options, and tips for self-care and disease management are also available.
Watch the video below and visit AltogetherEczema.org to learn more about IADPO’s new initiative.
Support from industry
Representatives from industry such as the pharmaceutical company, Sanofi, are also taking part in the global effort.
“We are proud to join the global atopic dermatitis community in recognizing the first Atopic Dermatitis Day, which will help raise awareness about this chronic, often overlooked condition and increase the understanding of AD as more than just a skin condition,” said Bill Sibold, Executive Vice President, Sanofi Genzyme in a press release.
To support Atopic Dermatitis Day, Sanofi and alliance partner Regeneron, have released a poignant video that illustrates the courage of patients living with moderate-to-severe atopic dermatitis. For each view, retweet, or Facebook share of the video on Sanofi, Sanofi Genzyme, or Regeneron social channels using the hashtag #ChangeAD, Sanofi Genzyme and Regeneron will donate $1 to IADPO to support AD education and awareness around the world.
Click here to watch and share Sanofi’s video.
Groups tailor event in their regions
The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is also taking part in the initiative, calling it the 1st World European Atopic Eczema Awareness Day in their region. World AD Day is being launched at the 27th European Academy of Dermatology and Venerology (EADV) Congress in Paris, which began on Sept. 12 and will be held until Sept. 16.
EFA has also released a new report titled Itching for Life: Quality of Life and costs for people living with severe atopic eczema in Europe. The report highlights the reality of AD, which come from the largest-ever Quality of Life survey about the condition. It is available on the EFA website at: https://goo.gl/ojCfyu
Survey findings reveal that many patients (23%) do not have an optimistic view on their life with AD. Furthermore, 45% had serious AD symptoms at the time of the survey, and despite care, they had—on an almost daily basis—dry or rough skin (36%), itchy skin (28%), cracked skin (17%), and felt that their skin was flaking off (20%). With only 15% of the patients highly satisfied with their current treatment, patients and their families ask for more investment in research to develop better treatments to break cycles and flares.
Patients also require more understanding and multidisciplinary care. According to 45% of the patients interviewed, AD influenced their relationships, sexual life, and hobbies, in the week before the survey. Their skin also made them feel unable to perform their tasks at work, to the best of their ability (38%). Notably, one in four patients in the survey declared themselves sometimes unable to face life, especially among those aged 50 years and above.
“Severe atopic eczema patients need support with the utmost urgency. In our survey they express how they cope with large and deep symptoms for long periods, impacting their whole body, life, and energy to face life,” said EFA President Mikaela Odemyr in a press release. “They reveal how resilient and strong they are to live with severe atopic eczema, but also how lonely and unacknowledged they live through it, dealing with a constant itch and recurring skin damage . . . we call on the medical and scientific community to join forces to better support patients with severe atopic eczema in their daily life challenges.”