An important part of managing hidradenitis suppurativa is empowering yourself with as much knowledge as possible. Below is a list of commonly asked questions about the cause, the disease and symptoms, comorbidities and management.
No, hidradenitis suppurativa is not contagious. Though it affects the skin, HS is a chronic inflammatory disorder, which means the condition is brought on by irregularities in the body’s own immune system.1,4,6
There is a strong link between smoking and HS9; most studies have shown that the incidence of smoking in HS patients is around 85 to 90%, which is much higher than in the general population. However, it is still not known whether stopping smoking helps in the management of HS.11
Although there is no cure for hidradenitis suppurativa, not all cases are progressive (meaning that the condition may not increase in severity over time). However, given the recurring nature of the condition, proper management is critical.2,4
No, there is no widely accepted diagnostic blood test for hidradenitis suppurativa.
No. Although HS can flare up due to overheating and excessive sweating, HS is not caused by poor hygiene.6, In addition to washing the affected areas with antibacterial soap, it is recommended that you avoid the use of perfume and deodorants on affected areas.
No. The exact cause of HS is unknown, but genetic factors as well as hormonal ones are thought to play a role in the development of HS. Other factors that may be linked to HS include smoking and obesity. While these two conditions do not cause HS, they are strongly associated with the condition and are thought to make it worse and contribute to flare-ups.6
It is very important to know that HS is not contagious, and it is not caused by poor hygiene, poor nutrition, or being overweight.
Research has found that there is a genetic predisposition to the hidradenitis suppurativa. In fact, 30% of patients have a family history of the condition.1
There are two schools of thought. Some feel that the disease can have a progressive course, meaning starting mild and getting worse over time; others feel that after the initial year or two the disease, patients with a mild form of the disease will have a fairly mild evolution and patients with a severe form of the disease will experience a severe evolution early on.
No. Once it has started, it will persist.9 It may get less symptomatic with advancing age, especially after menopause.8
Hidradenitis suppurativa can take on a variety of forms, which can be different from person to person. Likewise, the number of HS flare-ups can vary. Some of the most mild cases of HS can resemble small bumps or blackheads, while patients with more severe forms can have recurrent painful abscesses.1,3,4
Unfortunately, there is no cure for hidradenitis suppurativa. Though medical research has established a link between hidradenitis suppurativa and smoking, there is debate as to whether smoking can lead to HS, or if it is HS (and associated conditions like depression and a lack of physical activity) that makes people more likely to smoke.1,5,6 However, quitting smoking may help improve overall health.
To deal with the pain of larger inflamed lesions, sometimes a warm compress to help the lesion drain can relieve the pressure and associated pain. If that does not work, you may need to book an appointment for incision and drainage with your physician (or visit the ER) if urgent.8
If you need pain medication, you should obtain it through a sole healthcare provider (either primary care provider or HS specialist) whenever possible, so that a single person is involved in helping to control
The most important thing to note is that HS is a chronic disease that requires regular contact and continual care by a healthcare professional.7
If you are concerned about having any of the co-morbidities associated with HS, you should discuss these concerns with your nurse practitioner or family physician and report any symptoms that you may be experiencing.
If you develop a new lesion that you think might need to be drained, if a healed lesion returns within a few weeks, or if you are having significant pain, you should notify your physician or nurse practitioner immediately.
Appropriate care to continually control the disease may limit the damage. On the other hand, this condition affects certain areas of the skin and despite good care it can break out at any time. There are different levels of intensity to this disease; for some people it will be mild from the beginning, and stay mild, while others may have a more severe form of the disease. The severity can be determined by genetics and despite good care, severe forms cannot be prevented.8
A healthy lifestyle including a balanced diet is a crucial part of the management of HS. Although there is no strong evidence to support the elimination of specific foods, diet is important to maintain a healthy weight. Health care professionals suggest following the recommendations of the Canadian Food Guide. This guide is free and can be found online or at any dietician’s office.10
As obesity has been linked to increased risk and severity of HS, weight control is also important, and patients should aim to achieve an appropriate BMI (Body Mass Index).9
Depending on your BMI number, you will be classified as:12
The BMI formula is listed below. The BMI can be calculated using either metric or imperial measures (the results will be the same).
Metric Units (kilograms (kg) and meters (m)):
Weight in kg / (Height in meters)^22
Imperial (British) Units (pounds (lbs) and inches (in)):
Weight in pounds x 703 / (Height in inches)^22
Application of local antiseptics may reduce the smell of lesions caused by hidradenitis suppurativa. Discuss your options with a dermatologist.
Clothing specifically may not help with the management of hidradenitis suppurativa; however, patients should consult with their dermatologist about what works best for them based on the site and severity of their condition. Typically, cotton and loose-fitting clothes are preferable to synthetic, wool or slim garments.
It’s unconfirmed if hidradenitis suppurativa is the cause or effect of obesity. Research shows that HS is associated with being overweight and the severity of the disease increases with the degree of obesity.1,4 If overweight, losing weight may help improve overall health – discuss options with your health care provider.
Each person living with hidradenitis suppurativa will have a different experience with the condition and as a result, will be able to participate in different kinds of physical activities. Patients should consult with their dermatologist if they have any concerns about the kind of activities in which they can take part.
Although the exact cause of HS is unknown, it has been established that this is a disease of hair follicles localized in certain areas of the body bearing a type of glands called apocrine glands. They are located mainly in the armpit, groin, anogenital and breast areas. Inflammation, bacterial contamination and genetic factors also seem to play a role in the development of HS.6
Yes, research suggests there is a 50% increase in the risk of cancer in patients living with HS, as compared with the general population. Specific cancers reported include cutaneous squamous cell carcinoma, buccal cancer and hepatocellular cancer. However, this study did not adjust for cigarette smoking.1