The disturbing cry I often hear from new patients with hidradenitis suppurativa (HS), also called acne inversa, is: “I’m so discouraged. I’ve seen multiple doctors and I’ve tried many treatments without success. Sometimes I just want to give up.”
This disease’s most prominent symptom — recurring, painful boils that may drain, soil clothing and give off a foul odor — can make the sufferer feel unclean. The inflammation generally occurs in hidden areas that are often embarrassing to patients, such as the armpit or genital region, leading many of the disease’s victims to suffer in silence.
Those who seek help may have a boil lanced by a family doctor, only to have it return time and again. Or, they may struggle in vain under the care of an infectious disease specialist, taking less-than-effective antibiotics, even though cultures fail to reveal an infectious agent.
And then there is the depression, the despair, and the feeling of frustration and hopelessness. Suicide is occasionally considered. The emotional scarring can be as drastic as the tunnels and scars in their skin.
In terms of the Dermatology Life Quality Index (DLQI), hidradenitis suppurativa exceeds the measured impact of virtually all other dermatologic conditions, including acne, atopic dermatitis, and psoriasis. The disease can interfere with intimacy and job responsibilities, with sufferers often carrying two changes of clothing to accommodate sudden drainage. These features continually impact daily living. It is notable that the disease is likely to present around the end of puberty, when a young person is exploring intimacy and when self-image is often quite fragile.
For a disease that affects 1 to 4 percent of the population, HS is little-known and often misdiagnosed. A surgeon or family doctor who is unfamiliar with the condition may mistake it for acne or for an infection such as MRSA or staph. It is also a diagnosis widely unrecognized by the public. I recall speaking with a journalist who was shocked that she had not heard of such a common disease in more than 20 years on the medical beat.
Fortunately, awareness of HS seems to be increasing. People are becoming more open to seeking help for the condition, and medical professionals are becoming more proactive in its treatment. We as dermatologists can do much to help.
We must first be mindful of the disease’s often devastating emotional effects. Patients need to be reassured that they have a treatable medical condition, and that a dermatologist is the right person for the job.
We must also be on the lookout for signs of the disease. Besides recurring sterile abscesses in the intertriginous areas, the disease has several additional features:
The first, often seen among longtime sufferers, is tunnels beneath the skin, sometimes resulting in a boil that drains in one place when pressed in another.
Other helpful diagnostic features include:
A family history of boils or hidradenitis (in about 30 percent of patients).
Pilonidal sinus or cyst (also in about 30 percent of patients).
A history of acne (about 50 percent of patients).
A history of pimples or boils in the scalp (about 8 percent of patients).
Multiple blackhead structures entering a single pore are also common.
In addition to emphasizing the signs for diagnosis, we must move forward in adopting treatment pathways similar to those used for acne and other inflammatory conditions. We need to raise awareness of HS among colleagues from other specialties who may encounter this disease. For example, the condition may first be seen by a family physician or emergency room doctor confronted with an acute boil.
HS occurs three times more frequently in women than in men, so raising awareness in OB/GYNs can help. Similarly, urologists may be the first to encounter the process in males. Finally, HS may often be associated with other inflammatory diseases such as Crohn’s disease and rheumatoid arthritis. It is thus helpful for rheumatologists and GI specialists to be aware of this condition.
An excellent source of information, inspiration, and support for both medical professionals and patients is the website of the Hidradenitis Suppurativa Foundation. The site includes information about the diagnosis and treatment of the condition, as well as a directory of dermatologists and associated physicians with a special interest in treating the disease.
But we as dermatologists are best positioned to relieve the suffering of HS patients simply by reaching out and raising awareness among our medical colleagues and the public. There are patients whose quality of life depends upon it.