What’s it really like to live with eczema?
In August 2019, Global Parents for Eczema Research (GPER) hosted, along with four other organizations, and 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.
Understanding the Lived Experience…
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.
Our Survey Takeaways…
Unseen Costs of Eczema
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.
Eczema in Adults: Understanding Burden, Improving Options
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.
Eczema in Kids: Understanding the Caregiver Experience
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.
Want to Learn More?
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 our story library share their stories of what living with eczema is actually like and offer their hopes for the future of care and treatment.
Click the link below to learn more!
