First HS Community Meeting – Reports from the day

On the 30th January, the Irish Skin Foundation (ISF) and the ‘Hidradenitis Suppurativa Ireland’ Facebook Support group, held the first ever Hidradenitis Suppurativa (HS) Community Meeting for people with the condition, their families and supporters. HS is a chronic (long term) skin condition that can cause painful, inflamed areas typically located around the armpits, groin and in between the buttocks.  It affects up to 1% of the population and can be both physically and mentally distressing to live with.

The meeting was well attended and provided an opportunity to meet others in a similar situation, to access information, and to share experiences in a relaxed, understanding and supportive environment. Two guest speakers gave presentations, one from a patient point of view and the other from a dermatologist’s perspective.

The first speaker was Barry McGrath, who has HS, and has set up a HS Facebook online support group for those suffering from the condition. Barry spoke honestly and openly about his own experiences; the daily challenges living with this disease, the length of time it took to establish a diagnosis and the negative impact on his quality of life. However, his message was one of hope. His condition is now well controlled under the care of a dermatologist and plastic surgeon.

Lifestyle changes, including giving up smoking and being more careful about diet contributed to his improvement. If Barry were to offer one piece of advice to others suffering with HS, it would be to seek professional help at the earliest opportunity and request a referral to a dermatologist. Dermatologists have access to a range of treatments including new medicines licensed for HS. Barry concluded by saying that there are success stories and encouraged attendees to consider forming a HS support group to share information, raise awareness about this condition, and advocate on behalf of HS patients.

Consultant dermatologist, Dr Anne-Marie Tobin (Tallaght Hospital, Dublin) was the second speaker and provided a very informative and comprehensive overview of HS. Her presentation included the causes of HS, how the condition develops, treatment options, gaps in existing knowledge and what the future may hold. Dr Tobin emphasized how the patient should be at the centre of efforts to manage HS, with their dermatologist as the ‘driver’ to ensure delivery of the best care available, while working in partnership with surgeons, nursing and other supports, including patient support groups.

Dr Tobin went on to stress the importance of giving up smoking and maintaining a healthy weight (for example, please see body mass index online calculator: http://www.bmicalculator.ie/). She also mentioned the value of public health nurses as a resource for HS patients. Her vision of how HS could be best managed within the healthcare system included the need for HS clinics to be set up in dermatology centres around Ireland, with good links to related services such as plastic surgery and hormonal profiling. Dr Tobin has set up an early access service in Tallaght Hospital specifically for HS patients, so that effective treatment can be started before the disease progresses to a more severe stage.

The meeting concluded following a question and answer session and the feedback from attendees was very positive. The ISF hopes to hold further meetings in 2016, updates will be posted on the ISF site and in newsletters.

Barry McGrath, founder of the ‘Hidradenitis Suppurativa Ireland’ Facebook Support group had the following to say about the day:

From my perspective as a HS patient, the inaugural HS community meeting held recently in Dublin was a very positive and beneficial experience. It was great meeting with fellow HS sufferers, and it was very educational and informative to hear from a HS specialist like Dr. Tobin, who has her finger on the pulse in terms of the latest developments in HS research.

HS is not talked about openly by many sufferers as it can affect the intimate private parts of the body and there tends to be a sense of embarrassment associated with having HS. Consequently, feelings of isolation and being alone are very common amongst HS patients. The opportunity to meet with fellow HS sufferers and share our experiences together was a very welcome and worthwhile experience. I got to talk about aspects of living with HS that I have not previously discussed openly with anyone else. It was great to talk with people who understood my fears and concerns about HS and knew what I was talking about!

Dr Tobin’s talk and Q & A session was extremely beneficial to all. For many years, there was little evidence of any research into the condition and the HS community felt abandoned by the medical profession .It was therefore very encouraging to all HS patients to firstly hear that there are medical practitioners like Dr Tobin who have a strong professional interest in the condition. Secondly, it was great to hear from Dr Tobin about the hard work and efforts that HS researchers around the globe are currently making in trying to further understand the condition. I know that I and others felt very positive and hopeful about the future after hearing from Dr Tobin.

Overall, the HS community meeting a very good experience and we in the HS community are very thankful to those who organised and funded the event. For many of us, it was the very first time that we have had an outlet for our collective HS experiences. I am looking forward to future similar events.

*Of note, there is also a HS clinic in St. Vincent’s University Hospital, Dublin 4. Given that both centres are in Dublin, and following the abolition of catchment areas, referrals to either hospital may be made by GPs nationwide.

 

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