Hidradenitis Suppurativa

Hidradenitis suppurativa (HS), is a chronic, recurring, painful and debilitating inflammatory skin disease. The main symptoms are nodules, abscesses, and pus-discharging fistulas (channels leading out of the skin) which typically occur in the armpits, groin and buttocks. People with HS experience flare-ups of the disease as well as severe pain, which can have a major impact on quality of life.

HS develops in adulthood, is estimated to affect approximately 1 percent of the population in most studied countries, and is three to four times more common in women than in men. How and why HS develops is not yet fully understood. Approximately one third of people with HS are genetically predisposed to HS, and lifestyle factors such as smoking and obesity can also play a crucial role in its development.

The symptoms of pain, discharge and scarring are not only a physical burden. People with HS also experience stigma: worrying about or directly experiencing negative attitudes and responses from society in response to their symptoms. These feelings can lead to embarrassment, social isolation, low self-esteem and sexual life impairment, causing considerable psychological distress, and impacting all areas of life, including interpersonal relationships, education and work.

In its initial stages, HS is often mistaken for other skin conditions such as acne or boils, which means there can be delay in diagnosis of 10 years or more. People living with HS may have other conditions associated with HS (co-morbidities), such as arthropathies, metabolic syndrome, increased cardiovascular disease risk, inflammatory disorders and depression. Therefore, the need for greater awareness of HS, leading to earlier diagnosis and treatment, is critical, as the consequences of untreated HS are so wide-reaching, both mentally and physically.

Although there is currently no cure for HS, the condition can be managed, with a focus on relieving pain, healing existing wounds to prevent infection, preventing new lesions from forming and reducing the extent and progression of the disease, mainly through limiting inflammation.

The Unbearable Home has been co-created with people living with HS. It provides real insights into their daily life and demonstrates how even the smallest of tasks can be a huge challenge when living with HS.

Walk through their home to realise what it is like to have your home comforts stripped away; from relaxing on your favourite chair, getting a good night’s sleep, or enjoying a refreshing shower.