Hidradenitis Suppurativa
Living with hidradenitis suppurativa (HS) can be challenging, but you’re not alone. Scroll down to find our downloadable tools – developed with HS patients themselves* – that are designed to support you through every step of your HS journey. Feel free to share these materials with your healthcare team however you feel comfortable.
What is 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.
How common is hidradenitis suppurativa?
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.
Living with hidradenitis suppurativa
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.
Diagnosis
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.
Treatment goals
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.
Current management options
- Pain management
- Topical/Intralesional therapies
- Systemic therapies
- Traditional Immunosuppressive agents
- Hormonal agents
- Retinoids
- Biologics
- Procedural Management
Talking about HS: Your guide to better conversations
Whether it’s family, friends, or a doctor, talking about hidradenitis suppurativa (HS) may not always be easy. At UCB, we understand that HS can be unique for everyone, meaning conversations surrounding it should be too! Not only does this guide include tips for getting the most out of an appointment, but it also includes a symptom checker section that can be completed, to help ensure that everyone’s management plan is individual to them.
The guide is available to be downloaded or printed out to take to appointments; it can be filled out as many times as needed.
What is HS?: The facts vs the fiction
What causes Hidradenitis Suppurativa (HS)? It is contagious? Separate fact from fiction with our myth-busting guide to what HS really is, and isn’t. The myths and misconceptions about HS have been around for too long – it’s time we put them to rest.
Navigating HS: Meet the team
Many people with HS encounter a variety of medical experts from different specialities, usually dependent on what kind of symptoms they have.
Find out more about the team that help manage HS. You may also find it useful to download and print this guide to take with you for your next appointment.
Practical tips for managing HS
Knowing how to manage the symptoms of HS well can make a huge difference to your quality of life.
From practical tips such as what skin care to choose, to strategies that help support your emotional well-being, find out how you can start implementing positive changes today.
*These materials have been co-created and endorsed by people living with HS, who are members of HS Patient Advocacy Groups (PAGs) and patient groups across different European countries. We would like to thank patient representatives of the following organisations:
• Asociación de Enfermos de Hidrosadenitis (ASENDHI) in Spain;
• Solidarité Verneuil in France;
• Psoriasis- og Eksemforbundet in Norway;
• Hidradenitis Patiënten Vereniging in The Netherlands;
• AMICUS: Hidradenitis Suppurativa (HS) - Fundacja Amicus in Poland;
• EPIDERMIA (Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis) in Greece
