Generalized Pustular Psoriasis: Impact Beyond the Skin
Generalized pustular psoriasis (GPP) is not only about the physical symptoms that impact people living with the condition. GPP goes deeper, beyond the skin.
The physical symptoms of GPP can affect the body in many different ways. When a person experiences a GPP flare, painful pustules appear suddenly over large areas of their skin, usually along with redness, severe itch, and dry, cracked, or scaly skin. As GPP is a chronic, systemic disease it affects more than the skin with symptoms such as fever, headache, extreme tiredness, or a burning sensation on the skin. As well as intense physical symptoms, GPP comes with a heavy emotional and mental toll, which can affect day-to-day life. Even if people are not in an acute flare.
“Sometimes I don’t want to go out. I don’t want to be in public. I don’t want anybody to see me.” – Brandon, living with GPP
The Unwearable CollectionTM expresses the personal perspectives of people living with GPP including how GPP can leave people feeling isolated, anxious and depressed.
GPP may change the way people socialize and interact with their loved ones. The anxiety of what others might think about a person’s appearance, or the severity of symptoms, may make people living with GPP reluctant to go outside, hiding from the public and increasing their feelings of isolation.
The dread of people commenting on their condition or bringing unwanted attention to their symptoms can result in people feeling obliged to cover up from head to toe, for fear of someone looking at them.
“It affects me emotionally, because I do not dare to start a relationship with another man.” - Ray, living with GPP
GPP can also affect the intimate side of people’s lives. A barrier can be created when approaching a new relationship, figuring out whether the other person will accept their condition, including both the physical and mental aspects of GPP. Physical contact with a loved one may cause pain during a flare, with some comparing it to the feeling of shards of glass against their skin, or the feeling of thousands of paper cuts. Being unable to pick up their children, or embrace in times of stress, are aspects that people living with GPP may experience.
Although living with GPP is not easy, it’s important to remember that there are ways to help manage the disease. Staying connected to a support network of friends and family can really help overcome feelings of isolation. Online communities and patient organizations can connect people with similar experiences of GPP.