ISF shines a light on little known and misunderstood skin disease, Hidradenitis Suppurativa

The Irish Skin Foundation (ISF) launched a new educational resource in September aimed at people living with a challenging skin condition, Hidradenitis suppurativa (HS), which can cause significant pain, anguish and result in stigma.

The charity supporting people with diseases is also seeking to improve understanding of the skin condition among the general public and healthcare professionals, so that they are more conscious of the potentially devastating impact of this lesser known incurable disease.

Until now, very little information has been available to Irish people who have HS. This is why the ISF is launching a dedicated section on their website specifically for the condition – www.irishskinfoundation.ie/HS

What is HS?

HS is a long-term skin disease causing painful lesions, boils and deep abscesses in the armpits, groin and upper/inner thighs, between the buttocks and under the breasts. These can lead to devastating breakouts that rupture and leak foul-smelling fluid, soft tissue damage and very painful scarring.

HS can occur at any age but most commonly develops in adolescents and young adults, and may decline after the age of 50-55. The condition is three times more likely to develop in women than men. People with the disease tend to develop self-management habits to deal with the boils or nodules during its early stages, but as the condition worsens or spreads professional help is needed.1

The condition can cause a lot of embarrassment because of the sites of breakouts on the body; it is thought that hundreds of people in Ireland may be living with the condition without a diagnosis. HS is also occasionally mistaken as a STD or wrongly linked to poor personal hygiene.

Some dermatologists now believe that philosopher Karl Marx lived with the condition and that HS may have contributed to his self-loathing, and may well have influenced some of his writings. HS typically affects areas on the body:

  • with apocrine glands (sweat glands in areas with abundant hair follicles) such as the armpits and groin or
  • where the skin rubs together, such as under the breasts, in between the buttock, and on the inner thighs.

Infection in hair follicles forming abscesses

“HS is poorly understood and can be devastating. The launch of our microsite today is an important first step towards increasing basic awareness and providing some reliable information about HS here in Ireland. If you have or think you recognise some of the symptoms – recurring painful bumps, pustules and abscesses in the armpits, groin, under the breasts, in between the buttocks or inner thigh – read more about HS on our site and speak to your GP about a referral to a dermatologist”, said David McMahon, Head of Advocacy with the ISF.

Dr Anne-Marie Tobin, Consultant Dermatologist, Tallaght Hospital, explains: “We don’t know exactly what causes HS, but infection of hair follicles followed by dysregulation (abnormality or impairment) of immunity play a role. Patients develop infection in hair follicles which form abscesses which subsequently discharge with inflammation in the axillae (underarms), groin or under the breasts of patients. Some patients also have a family history suggesting a genetic influence and lifestyle factors such as smoking and increased body mass index appear to be important. Up until now, it may be difficult for those who have the condition to find information, and I would encourage those who are concerned or indeed who have HS to visit the Irish Skin Foundation site, get the facts, and to speak to your GP.”

“I developed HS as a teenager”

Barry McGrath, who has lived with HS since he was a teenager, added; “When I developed HS as a thirteen year old my life was turned upside down. I slowly changed from an outgoing and sporty teenager to a very self-conscious and anxious person. It was hard for people to understand what I was going through; relationships were impossible, simple things such as walking or lifting my arms to catch a ball were difficult at times and I was in constant pain. Later on, I was diagnosed with depression and I felt as if HS had taken over my life.”

However, Barry’s experience has improved in recent years; “Luckily, in the last few years I have had better success with treatments – I have also made a lot of important lifestyle changes. I wish the information that the Irish Skin Foundation has online was available to me when I was thirteen and I hope my story can help for others going through their own struggles with HS. ”

If you or someone you know is experiencing recurring, painful boils or spots in the armpits or groin area, it is important to see your family GP to ensure proper diagnosis and care. Visit the
‘Talking to Your GP’ section on the Irish Skin Foundation website for information and tips to help guide a discussion with your doctor. www.irishskinfoundation.ie/HS