ALEXANDRA | BURIED BENEATH THE WIGS OF HER YOUTH
"Hair is seen as a girl's wealth. I tried to replace my hair with different wigs, similar in colour to mine. None of this made me feel better. I hated my body, I hated myself"
- ALEXANDRA
Beyond My Skin: Portraits of Battles with Skin Disease
OVERVIEW
In 2023, the European Academy of Dermatology and Venereology (EADV) embarked on a powerful initiative to shed light on the often-hidden burden of skin diseases through a fine art photography project. This project is a central part of EADV’s Advocacy Strategy, designed to raise awareness about the emotional, psychological, and social challenges faced by those living with skin conditions. The goal is to bring these personal stories to the forefront, fostering a deeper understanding and driving support for dermatological care.
“Before this disease I had a full life. 24 hours in a day was not enough. Now I am afraid to even hug my grandchildren.”
EFFIE | BULLOUS PEMPHIGOID
PROJECT OVERVIEW
Beyond My Skin: Portraits of Everyday Battles with Skin Disease is a compelling photographic project that took me across the UK, Romania, and Greece. The project aimed to capture diverse narratives from individuals dealing with a range of skin diseases, each with unique personal and healthcare challenges. By traveling to these three countries, I sought to portray the varied experiences of patients in different healthcare contexts and highlight the universal aspects of their struggles.
No matter how much I cried, no matter how much I struggled, I remained trapped in this skin with time passing painfully over me.
STAVROULA | HIDRADENITIS SUPPURATIVA
CAPTURING DIVERSE NARRATIVES
In the UK, Romania, and Greece, the project focused on patients with a spectrum of skin conditions, revealing the profound impact these diseases have on their lives. The goal was to showcase not only the personal stories of these individuals but also the differences in healthcare access and support systems in each country.
In Romania, the project featured individuals like Alexandra, who has alopecia and has faced significant stigma and isolation. Her story is a testament to her strength and resilience. Eugen, living with melanoma, exemplified the burden of balancing familial responsibilities with his health challenges. Lulia, a ceramist battling skin cancer, used her art to navigate and express her experience with illness.
In Greece, the project highlighted Stavroula, who suffers from Hidradenitis Suppurativa and endured severe isolation and pain. Her father's unwavering support was a crucial part of her journey. Maria, with Bullous Pemphigoid, shared her struggles with a debilitating condition that has drastically altered her quality of life. Finally, Tasoula's story, marked by both her physical and emotional battles with skin disease, underscored the profound impact on her daily existence.
In the past I used my art to explore the relationship between mind and body but the physical and emotional impact of having skin cancer left me exhausted and overwhelmed.
LULIA | LYMPHOMA
IMPACT
Beyond My Skin is more than a photographic exhibition; it is a multi-faceted exploration of the human experience behind skin diseases. The diverse settings and narratives captured through this project highlight the varying challenges faced by individuals in different healthcare environments. By showcasing these stories, the project aims to bridge the gap between public perception and the lived realities of those with skin conditions.
Set to be exhibited at the European Parliament in 2025, this project will serve as a powerful tool for advocacy and education. It seeks to challenge misconceptions, foster empathy, and inspire meaningful change in the approach to dermatological care. Through evocative imagery and heartfelt narratives, Beyond My Skin aspires to create a more inclusive and compassionate understanding of the impact of skin diseases.
