“I spoke with a 20-year-old girl with hidradenitis suppurativa. She didn’t want to have children because she didn’t want to transmit the disease to them. She didn’t trust doctors, she didn’t trust the system… She believed nobody was ever going to love her”.
Silvia Lobo, President, Spanish Hidradenitis Suppurativa Patient Association (ASENDHI)
This very raw statement offers a glimpse into the reality with which many people suffering from hidradenitis suppurativa (HS) must live.
Hidradenitis suppurativa, also called acne inversa, affects nearly 450,000 people in Spain. However, many of them still do not know this, since they lack a diagnosis that puts a name to what is happening to them.
Hidradenitis suppurativa is a chronic disease that goes well beyond mere pimples. It causes pain and a significant decrease in the quality of life of people who suffer from it.
These people must live with not only physical and emotional impairment, but also the stigma and isolation caused by the discharge and odour of these lesions, as well as the fact that this disease is unknown and therefore invisible to society.
This document approaches HS from a holistic point of view — biological, psychological, social and economic — that encompasses all aspects and facets of the disease in an attempt to arrive at a comprehensive, interdisciplinary approach through a simple, efficient healthcare process.
On the one hand, it is intended to raise awareness of this disease on all healthcare and social levels. On the other hand, it is intended to serve as a working tool for healthcare professionals, patients and public administrations to allow a suitable standard of care to be achieved. To do this, feasible recommendations for intervention with an interdisciplinary outlook were proposed. These recommendations will allow the quality of life of people affected by HS to be improved.
The Spanish Hidradenitis Suppurativa Patient Association (ASENDHI) and 20 scientific associa- tions came together to endorse and support this initiative and show their commitment to innovation and continuous improvement, thereby helping to improve knowledge and promote optimal management of this disease.