Generalized pustular psoriasis is not ‘sensitive’ content: the impact on the GPP patient community
It is important for the patient community to consume content related to their disease on social media. Even more so when it comes to a lifelong skin condition with a diversity of symptoms like generalized pustular psoriasis (GPP), where the prevalence is low, and it can be challenging to find other people living with the condition.
What is generalized pustular psoriasis?
Generalized pustular psoriasis (GPP), is a life-long condition that can affect the whole body. People who live with the disease can experience ongoing symptoms, that can vary in duration. It is a very unpredictable disease, which means that people can live with feelings of anxiety and depression related to not knowing when GPP symptoms may strike.
GPP flares can appear suddenly, and manifest as painful, sterile pustules on the skin and may be accompanied by symptoms such as:
Fever
Muscle weakness
Chills
Extreme tiredness
Joint pain
There may also be other health concerns related to GPP, such as serious infections or organ damage. While this may not affect everyone having a GPP flare, it is an important reason to seek medical care.
Even outside of a flare, most people living with GPP experience ongoing symptoms including skin scaling and redness.
How can visibility on social media help?
The prevalence of GPP is low, ranging from 1.76 to 124 patients per million persons. As it’s such a rare disease, it’s not always easy to recognize and can often be confused with diseases such as plaque psoriasis, even though they are two distinct conditions.
Many current social media platform guidelines mean that social media algorithms often block real-life images of body parts showing GPP symptoms, as it deems them to be ‘negative’ or ‘triggering’. Social media is a powerful tool for creating communities and learning from others around the world. The current guidelines mean that awareness of GPP is restricted, which may stop people who are potentially living with GPP but are undiagnosed, from understanding their disease.
GPP is not ‘sensitive’ content.
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