Hidradenitis Suppurativa (HS)

    What is HS,
    and who are HS Ireland?

    So what is hidradenitis suppurativa (HS)?

    The official working definition of HS is as follows:

    “Hidradenitis suppurativa 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”.

    Dessau definition, 1st International Conference on Hidradenitis suppurativa/Acne inversa, March 30-April 1, 2006, Dessau, Germany. [ Kurzen et al 2008 and/or Zouboulis et al, 2015]

    HS sometimes has different names across the globe, most commonly this includes acne inversa.

    Some images of HS can be seen below

    HS Scars

    HS Scars

    Hurley Stage I

    Hurley Stage I

    Hurley Stage II

    Hurley Stage II

    Who are HS Ireland?

    HS Ireland is a patient-focused organisation formed to support those (and their friends and family!) in Ireland living with HS.

     

    Our Vision:

    A society with improved HS awareness, knowledge, supports, and treatments

     

    Our Mission:

    To empower people affected by HS to live life to their fullest potential through support, research, and representation.

    The People Behind it

    Barry

    Barry McGrath has been living with HS for over 35 years, and has seen many improvements in HS care, research, and treatment in that time. Barry co-founded HS Ireland and uses his lived experience as an HS advocate and as a patient research partner with HS researchers internationally.

    Barry is a former scientific researcher and university lecturer and is a EUPATI patient expert. He works with a clinical research organisation, specialising in creating plain language content. Barry enjoys communicating HS-related information to different audiences. In his spare time, Barry enjoys the arts, hiking, movies, and reading.

    Angela

    Angela Ruggiero is a Biologist working with the EPA in Dublin. She has had hidradenitis suppurativa for about 35 years and although new patients are in a much better situation now, she helps with filling the many gaps between patients and the doctor’s community.

    She is particularly interested in the “gut–skin axis theory” suggesting a relationship in which the immune properties of the gut microbiota can also influence skin health and in general in the life changes that can coadiuvate the medical treatments in having a better control of the disease. She loves advocate for people with HS and welcome the opportunity of coaching the one that choose a more holistic and natural approach, as she managed to be almost in remission after few surgeries and changing diet and lifestyle.

    Angela

    Angela Ruggiero is a Biologist working with the EPA in Dublin. She has had hidradenitis suppurativa for about 35 years and although new patients are in a much better situation now, she helps with filling the many gaps between patients and the doctor’s community.

    She is particularly interested in the “gut–skin axis theory” suggesting a relationship in which the immune properties of the gut microbiota can also influence skin health and in general in the life changes that can coadiuvate the medical treatments in having a better control of the disease. She loves advocate for people with HS and welcome the opportunity of coaching the one that choose a more holistic and natural approach, as she managed to be almost in remission after few surgeries and changing diet and lifestyle.

    Conor

    Conor was diagnosed with HS in 2019, after just over 10 years of battling the disease before it was recognised. Like many others, Conor has been on several prescription drugs, undergone surgeries, and used nothing less than a spectacular amount of bandaging in his journey with HS to date.

    Conor’s experience and knowledge sees him supporting technology and governance within HS Ireland, in addition to undertaking and supporting other activities that help to advocate and contribute to HS Ireland’s vision. Conor is also currently undertaking the EUPATI Patient Expert Training Programme. Conor’s interests include mental wellbeing and psychology, technology, animal welfare, and motorcycles.

    Aine

    Aine O Connor is a primary school principal who was diagnosed with HS over twenty years ago. Aine is aware that HS is a relatively unknown disease but it can have a huge impact on those who suffer with it.

    Aine’s aim is to provide support to people with HS and to raise awareness of the disease. Aine copes with her HS by spending time with family and friends and bringing her two crazy golden retrievers for walks in nature.

    Aine

    Aine O Connor is a primary school principal who was diagnosed with HS over twenty years ago. Aine is aware that HS is a relatively unknown disease but it can have a huge impact on those who suffer with it.

    Aine’s aim is to provide support to people with HS and to raise awareness of the disease. Aine copes with her HS by spending time with family and friends and bringing her two crazy golden retrievers for walks in nature.

    Stefano

    Stefano has shared his life with his girlfriend, who has HS, for the past 35 years. He has witnessed all the indifference, misery, and pain that this disease can cause. For a long time, he thought that he knew more than the doctors themselves.

    Stefano helps with increasing awareness and to give hope that something can be done. He manages a wine shop in Dublin and produces his own Irish whiskey.

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