What is Hidradenitis suppurativa?
Also called Acne inversa or Verneuil‘s disease
Most people develop an abscess, a localized accumulation of pus, at least once in their lives. An abscess generally causes considerable pain. The affected tissue is notably swollen, red, and accompanied by a hot sensation. In many cases, a blue discoloration of the skin is also apparent.
The first step to treating an abscess is the external application of blistering ointments or antibiotic salves and tinctures. If the abscess continues to grow in size, a surgical incision may be needed to deroof the abscess, and drain secretions. Failure to effectively contain the abscess externally may result in the infection spreading further into the neighboring tissue. Such tunnels filled with pus are called fistulas.
If abscesses and fistulas form repeatedly, a patient may suffer from a condition called hidradenitis suppurativa, which is also known as acne inversa – in which the most affected areas are armpits, groin area, anal, and breast regions. No other skin disease is known to cause such severe impairment to a patient’s quality of life *.
Inflammation occurs mainly in the armpit, pubic and groin areas. All regions where skin rubs against skin are at risk. However, all other regions of the body can also be affected.
The disease is divided into different degrees of severity according to Hurley:
Stationary abscess operations in 2013 in Germany
Minimum number of HS affected people in Germany
HS first mentioned by French surgeon Velpeau
Possible degree of disability due to HS
The chronic disease hidradenitis suppurativa
Hidradenitis suppurativa/acne inversa (HS) is a chronic, inflammatory, recurrent skin disease that generally appears after puberty, and can cause scarring. It usually presents with painful, deep-seated, inflamed lesions in the apocrine gland-bearing areas of the body, most commonly the axillae, inguinal and anogenital regions. (Dessauer definition)*
Despite intensive research over the last decade, the pathogenesis of hidradenitis suppurativa / acne inversa is still not fully understood. In particular, the reason for the chronic nature of the disease has not been discovered or agreed upon within the medical community. The major pathogenic cause, however, is believed to be the hyperkeratosis with an occlusion of the upper part of the hair follicle.
The creation of an abscess in hidradenitis suppurativa
What HS means to patients
“HS is a nightmare. From year to year, it becomes worse and destroys my body, my sexuality, my self-esteem.”
Manuela H., affected by the disease for 15 years
“HS limits my private life, as well as my career, but I do not let it rule my life.”
Wolfgang K., affected by the disease for 35 years
“I would like to be able to hold my child in my arms and cuddle her, without pain.”
Stephanie N., affected by the disease for 7 years
“25 years of my life, I have not lived – but suffered.”
Doris K., affected by the disease for 25 years
“HS puts my joy of life on hold. I have lost my smile and my laughter. It means to be in the hospital every 4-8 weeks and go through extensive surgery. My body is full of scars … but first and foremost it means pain.”
Svenjana K., affected by the disease for 12 years
“Unpleasant odor, disgust, fear, and restriction are a part of my normal, everyday life.”
Sabine W., affected by the disease since the age of 19
The first step to learn to deal better with a chronic disease such as hidradenitis suppurativa is to look for fellow combatants. The self-help groups in the lAight®-Network are lively discussion groups, on Facebook and in forums. They meet at informal meetings all over Germany, provide information and try to improve their own situation and care.