Hidradenitis suppurativa / acne inversa (HS) is a chronic, inflammatory, recurrent, debilitating skin disease of the hair follicle that usually presents after puberty with painful, deep-seated, inflamed lesions in the apocrine gland-bearing areas of the body, most commonly the axillae, inguinal and anogenital regions. The familial cases may present mutations at the nicastrin gene of the gamma-secretase complex (chrom. 19p13).

  • Specific challenges associated with the recognition of the condition

The disease is not recognised when mild, despite the existence of clinical diagnostic criteria been considered as recurrent bacterial follicultis / recurrent abscesses and been treated repeatedly by short-term antibiotics / incisional surgery. There is a critical worldwide delay of diagnosis of 7.2 years. Still unknown molecular and immunological background, no biomarker available.

  • Specific challenges associated with the diagnosis

The entity is unknown in several medical specialties.

  • Specific challenges associated with the treatment

Optimum treatment requires a wide expertise.

  • Specific challenges associated with care of these patients over their lifespan – Quality of life issues – Gaps accross the care

Chronic, initially recurrent, later scarring disease. Long-term follow-up and repeated treatment in specialised centers is required. No widespread experience, since dermatologists only examine 4 pts/year, surgeons 2 pts/year and general practitioners 0.5 pts/year (spontaneous disease). The ambulatory follow-up of wound healing is unsatisfactory even in the vicinity of specialised centers. Strongest influence on the quality of life among all dermatological diseases. Great reduction of workability.

Incidence : 6.0 / 100 000 inhabitants per year (spontaneous disease)

Prevalence: 0.27-5 / 10 000 (familial disease), 5.3-100 / 10 000 (spontaneous