What's it really like to live with eczema?
Have you ever wished you could tell the people who research, develop & regulate
treatments for eczema what's most important to you?
treatments for eczema what's most important to you?
The More Than Skin Deep initiative for eczema did just that!
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In August 2019, five organizations launched the More Than Skin Deep initiative to inform treatment research and development for atopic dermatitis, the most prevalent form of eczema. In September 2019, adults and children living with eczema and their families were given an opportunity to share their perspectives on what it’s like to live with eczema with U.S. Food and Drug Administration (FDA) regulators, drug developers, and researchers at the first-ever patient-focused drug development (PFDD) meeting dedicated to eczema.
This meeting and a contemporaneous web-based survey addressed the symptom burdens and quality of life impacts of eczema and how individuals were treating and managing the condition. Since then, the initiative has continued its efforts to elevate the national dialogue around eczema, sharing personal stories and data from patients, providers, and caregivers to catalyze progress towards more targeted therapies. |
Eczema is an isolating disease. It’s not just a skin problem; it’s a whole-body problem. Hear from individuals who have come through physical and emotional pain and found community and hope in the promise of science.
Key Survey Findings
These infographics highlight the burden, frustrations, costs, and quality of life impact of eczema as described by patients and caregivers in the More Than Skin Deep Survey.
Unseen Costs of Eczema
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Eczema is a highly variable inflammatory skin disease that affects individuals of all ages and often contributes to physical, emotional, and financial distress. Despite its prevalence, it remains a commonly underestimated and misunderstood condition, with some of its most excruciating burdens hidden from view.
Download the PDF here >> |
Eczema in Adults: Understanding Burden, Improving Options
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Adults of all ages can have eczema – and many do. The severity of symptoms is highly individualized and variable, often impacting every aspect of life, from sleep to work to hobbies to relationships, making those affected feel physically and emotionally exhausted.
Download the PDF here >> |
Eczema in Kids: Understanding the Caregiver Experience
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Atopic dermatitis (AD) is the most common form of eczema and affects about 13 percent of all children in the U.S., often starting in infancy or early childhood. Symptoms, severity, and impact vary significantly from child to child and over time, affecting quality of life for both patients and caregivers.
Download the PDF here >> |
More Than Skin Deep Story Library
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The true impact of eczema is best understood through the stories and experiences of individuals who live with it every day. For those affected, the burden goes far beyond a simple sensation or itch and can permeate nearly every aspect of life and health. The patients, providers and caregivers featured in this library share their stories of what living with eczema is actually like and offer their hopes for the future of care and treatment.
Read patient, provider, and caregiver stories here >> |
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Voice of the Patient Report
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"Understanding the Lived Experience of Eczema" documents in compelling testimony, data, and photos from patients and caregivers the need to relieve heavy physical, mental, emotional, social, and financial burdens imposed by eczema and its treatment.
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