HS Awarenessweek June 7-13, 2021

         

         

All over the world, people with the serious, chronic skin condition hidradenitis suppurativa (HS) are asking for attention to their disease during the week of June 7. The Hidradenitis Patients Association does this in the Netherlands by literally portraying the condition with a series of artistic and confrontational photos and interviews.

Not visible, but just as painful is the damaged self-image and the psychological suffering that is hidden behind HS. Actress Margôt Ros made two vulnerable and impressive visual interviews for Awareness Week that describe what HS does to someone.

Threshold over for more awareness

“By showing the early and severely affected areas that hidradenitis causes, we hope to reach people who don't know what they have yet,” says Mirella van de Bunte, president of the Hidradenitis Patients' Association. “That they recognize themselves in it and go to the doctor. That is also the reason that the people who contributed to this really crossed a threshold, in order to make HS more known. Very brave, because most always hide the spots under clothing. Yes, even with intimate contact. HS has a significant impact on the lives of an estimated 200,000 people in the Netherlands who have some form of hidradenitis.”

Late diagnosis and psychological distress

Hidradenitis is characterized by painful and recurring inflammation that occurs most often in skin folds such as the armpits, around the buttocks and under the breasts. But Hidradenitis can basically develop anywhere on your body where hair follicles are. With the exception of palms, soles and the lips of your mouth.

HS is wrongly regarded as a 'dirty' condition and is taboo for too many people. There is little talk about it, with all the consequences that entails. Many people do not go to the doctor or go to the doctor too late, who also does not always make the diagnosis on time. Van de Bunte: “The aim of the patient association is to use this campaign, among other things, to shorten the diagnosis time, but also to make the psychological burden open to discussion. That is why we are also very happy with the penetrating videos that we have made with Margôt Ros and dermatologist Patrick Kemperman”.

On average, patients only know what their condition is called after about 7 years of complaints, which means that the right treatment is not forthcoming for a long time.
Probing videos have been made with actress Margôt Ros, sensitive interviews by Jeroen Kleijne and artistic portraits by Jet van Gaal.

Catchy interviews that get to the heart of the HS patients' problems:


"I don't like to expose myself"
Read the full interview here >>>


"I lay on a hospital bed in the living room for nine months"
Read the full interview here >>>


"Sometimes the pain makes me really desperate"
Read the full interview here >>>


"At some point I really wasn't myself anymore"
Read the full interview here >>>


"A person is much more than a few scars"
Read the full interview here >>>

"Cycling or taking a walk is not really possible"
Read the full interview here >>>

De Hidradenitis Patiënten Vereniging (HPV) is een landelijke patiëntenorganisatie,
opgericht in augustus 1997 en heeft de ANBI status (# 8063519020).

Word lid!