Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration --- hence the name) involving significant scarring.
Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.
Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.
HS was first described in 1839 and has since been called many names. We still cannot agree on what to call it. Germans prefer Akne Inversa, the French still like to use Verneuil's, which we'll admit, sounds much better than Hidradenitis Suppurativa ('oozing inflamed sweat glands'). All are equally correct and equally wrong. All but names for symptoms of an underlying disease we don't yet know.
..."correct" names for this disease:
Hidradenitis Suppurativa (HS)
alt: Hidradenitis Supportiva
Acne Inversa (AI)
Apocrine Acne
Acne conglobata
Apocrinitis
Verneuil's disease
Velpeau's disease
Fox-den disease
Pyodermia sinifica fistulans
Internationally:
Hidrosadénite Suppurée (fr)
Hidrosadenite Supurativa (es)
Idrosadenite suppurativa (it)
Maladie de Verneuil (fr)
Doença de Verneuil (pt)
Akne Inversa (de)
гнойного гидраденита (ru)
...has been diagnosed as, but is not:
Folliculitis
Acne
Boils
Cysts (sebaceous, inclusion and subcutaneous)
Furuncles
Carbuncles
Poor Hygiene
...is definitely not:
contagious
Herpes
STD
Cancer
Allergies
Plague
...often happens in conjunction with:
PCOS / Insulin Resistance / Androgen Dysfunction
Crohns and other inflammatory auto-immune conditions
Anemia
Hyperhydrosis / hyperhidrosis
Depression
Acne Vulgaris / Cystic / Conglobata
Pilonidal cysts
Stages of the Disease
Hidradenitis typically develops slowly over time. Since there are no 100% successful treatments it will run its course. Development differs, however, from individual to individual. With some, the disease may stagnate and never develop past a mild stage, with others, it may escalate and become a debilitating disease. We do not know why.
This is how HS may progress:
Stage I. Solitary or multiple isolated abscess formation without scarring or sinus tracts;
Stage II. Recurrent abscesses, single or multiple widely separated lesions, with beginning sinus tract formation ("tunneling") and cicatrisation (formation of scar tissue);
Stage III. Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts, significant cicatrisation and persistent abscesses.
15 comments:
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