The Unwearable Collection: Fashion Inspired by Rare Diseases
The fashion collection "The Unwearable Collection" shows what it means to be affected by GPP. The collection visualises the GPP patients' experiences in an innovative awareness campaign.
Generalised Pustular Psoriasis
Generalised Pustular Psoriasis is a rare, auto-inflammatory, neutrophilic disease of the skin that is potentially life-threatening. GPP is characterised by episodic, pus-filled and very painful pustules over a large area of the body. In addition, severe reddening of the skin, scaling, fever, headaches, and extreme fatigue may occur. Often this chronic, systemic rare disease affects mental health and shapes the emotional state of patients. Generalised Pustular Psoriasis is not only painful, but also stigmatised: although GPP is genetic and non-contagious, people are often afraid of infection and shy away from the inflamed skin.
The treatment of Generalised Pustular Psoriasis must usually be carried out quickly and effectively in a clinic with a focus on dermatology for in-patients, as otherwise the rare disease can take a serious course. For the treatment of GPP, no approved drugs are yet available that specifically address the inflammatory mechanism of the rare condition. Specific therapeutic approaches are currently being investigated in clinical trials. They are intended to inhibit the IL-36 signalling pathway underlying GPP with monoclonal, humanised IL-36 receptor antibodies.
Awareness à la mode: portraying what the suffering feels like
Designer Bart Hess was inspired by the authentic stories of three patients with GPP: Christine, Brandon, and Dale shared their individual experiences with the rare disease. Hess interpreted the feelings and translated them into a total of four fashion designs that define the Unwearable Collection™.
Each of the collection pieces represents a typical experience of patients with GPP: the pain of isolation, the physical pain, the life-threatening danger of the condition, and the intensity of relapses.
With his approach, Hess makes the burden of Generalised Pustular Psoriasis palpable - with the help of a visual medium that many people can identify with: Fashion.
The pain of isolation
This design of sharp-edged glass, symbolises the physical and emotional isolation unfolding between sufferers and their families.
"It was so bad all over my body that I couldn't even pick up my daughter. Even when she touched me, I would walk away. Because sometimes careful touches hurt like crazy." - Christine
The slivers of paper used for this design give the feeling of "paper cuts" to which GPP relapses are compared.
"It will feel like a cut by a piece of paper, but ten thousand times over the body."
This design is made up of hundreds of knives. It symbolises the life-threatening danger posed by the rare disease.
"When I have a really heavy flare up, sometimes it feels like someone is stabbing me with knives over and over again." - Christine
Intensity of Relapses
The relapse intensity is visualised in this design: The artificial flames spiralling upwards represent the feeling of a wildfire that spreads across the skin at breakneck speed.
"It can start with a bit of a fever. Then when my skin gets red, it can develop little blisters or pustules." - Brandon
About the designer Bart Hess
Bart Hess is an internationally renowned artist and textile designer. In his work, Hess combines materials, animations and photographs in a surrealistic way to tell "real life stories" with his designs.
Because of his creativity and ability to make connections between materials and bodily experiences, Bart is a partner of Boehringer Ingelheim's GPP project (in German).
The Unwearable Collection™ Eine Modekollektion, die niemand freiwillig tragen würde – inspiriert von den Erfahrungen GPP-Betroffener. Website. Letzter Abruf: 23.01.2023
- GPPundICH.de: Generalisierte Pustulöse Psoriasis: Gefangen in deiner Haut? Website. Website. Last visited: 23.02.2023.
- Boehringer Interaktiv: Wenn die GPP ausbricht. Generalisierte Pustulöse Psoriasis.. Website. Last visited: 23.02.2023.
Rare Disease Day
Since 2008, the worldwide Rare Disease Day has taken place every year on February 28. esanum joins this awareness day and reports not only on current topics, but also on possible symptom complexes, diagnostics, therapy approaches and orphan drugs for the treatment of rare diseases. You can find more information on our dedicated Rare Disease Database.