Global understanding: Atopic dermatitis awareness campaign supports people around world
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Atopic dermatitis (AD) is the most common form of eczema. Characterized as a chronic inflammatory skin disease that affects both adults and children, those with AD suffer from itchy, red and inflamed skin.
“We know that patients with moderate to severe atopic dermatitis suffer greatly from their disease,” Judit H. Nyirady, MD, MBA, vice president of Global Medical Affairs at LEO Pharma, told Healio. “We also know that patients become isolated due to the sociological impact of this disease. It was important for LEO Pharma to find these great individuals and let them tell their stories so other patients know they are not alone and there is hope.”
Lora, who has lived with AD for more than 25 years, traveled to four countries to ask other individuals how they were able to discover peace, joy and empowerment despite living with AD.
“The purpose of this campaign is to showcase the patient perspective and to really understand what individuals who are living with atopic dermatitis are going through,” Lora told Healio.
The people and their stories
During Lora’s travels, she met Marjolaine from France, África from Spain, Laura from Italy and Julia from Germany. (The campaign only identifies participants by first name.) Each woman shared her story and how she has learned to live with AD.
Marjolaine, for instance, uses dance and movement therapy to translate her struggles with AD into art. Now, as a dance therapist and pharmacist, she has discovered that life can be beautiful with her condition.
África and Laura both discuss the shame they felt growing up with AD.
“People normally don’t realize how serious and how intense for us it is and how deeply we suffer [from] it,” África said in her campaign video.
To help others, África wrote a children’s book that gives kids the opportunity to explain their condition to others. Laura found support in an online AD community.
Julia, meanwhile, learned to view her disease as an opportunity for growth.
“AD had a positive effect on me,” she said in her video. “It helped me in many ways — not just with my skin, but also in dealing with struggles when things don’t go well.”
Using resources, raising awareness
Each participant in “AD Days Around the World” expressed the importance for those suffering from AD to learn more about their disease and take advantage of available resources. Advocacy groups, such as the National Eczema Association in the United States, function as valuable resources for patients in offering continuing education, treatment information and tools for finding dermatologists specializing in AD. Many advocacy groups also host online webinars and in-person expositions to foster an emotionally supportive community among patients.
“They have great tools and resources available to you,” Lora said.
The campaign also raises awareness to dermatologists concerning what they can do to support their patients with AD.
“Manage their skin disease first and foremost,” Nyirady said, “but also be receptive to hearing what is behind the skin and in the mind.”
“It’s important to let these patients know, as a dermatologist, that they are not alone in this journey,” Lora added. “No matter where they are in the world, they can bet there is somebody else who understands what they are going through.”
The campaign website contains AD resources, information about the disease and how to support the AD community.
“I am very excited LEO Pharma decided to embark on this campaign,” Nyirady said. “I know we are going to continue and expand to other geographical regions and include more patients.”
The website also includes video footage of Lora’s interviews with each AD patient.
“No one is alone in this journey,” Lora said. “And with this condition, you really can live an authentic and enjoyable life.”
References:
- AD Days Around the World. https://campaign.leo-pharma.com/addays/en/ad-days. Accessed Oct. 13, 2022.
- Ashley Ann Lora: Eczema patient advocate, consultant, speaker & facilitator. https://www.ashleyannlora.com. Accessed Oct. 14, 2022.