Barry McGrath, David McMahon and Dr Anne-Marie Tobin
TWO LOCALS have spoken out about an embarrassing and chronic skin condition that affects one per cent of the population but can go undiagnosed for years.
Barry McGrath, aged 42, from Parteen and Stacey O’Connor nee Hehir, aged 29, from Thomondgate both have hidradenitis suppurativa (HS), also known as acne inversa. It is characterised by recurrent painful nodules, ‘boil-like’ lumps or abscesses that can occur in the armpits, groin, perianal area, buttocks or under the breasts where certain sweat glands, known as apocrine glands are located.
Due to the nature of HS, and where it tends to manifest in the body, it can be a very distressing condition. People with HS have not traditionally spoken publicly about their symptoms or the pain they endure.
HS is all too often misdiagnosed, frequently mistaken for infection or boils. Adding to this burden, people living with HS may seek the opinion of up to five different healthcare professionals, and attend 17 appointments all over the course of eight years before a correct diagnosis of HS is made, according to a recent study.
The Irish Skin Foundation (ISF) is encouraging those potentially living with HS to reach out and seek information about their condition. As a part of this campaign, entitled #Five17Eight, the ISF has launched an online hub dedicated to HS. It contains stories from individuals living with HS, detailing often frustrating, painful but inspiring journeys to establish a diagnosis and get the condition under control.
Stacey said she kept her condition a secret.
“I was 18 when I first started to notice the symptoms. At the time I had no idea what it was. I was very embarrassed to tell anyone about it as it first affected my private area. I kept it a secret for around two years but after that I couldn't hide it anymore. My flare-ups would stop me from being able to do day to day things. At one point I wasn't able to walk for a week. The pain was unbearable,” said Stacey.
The best way that she can describe HS is that they are lumps that start and turn into abscesses.
“They fill, which is extremely painful, and then they drain which is also very sore. Finding a diagnosis can be extremely difficult due to a number of issues. The main one is probably people are so embarrassed as to what is happening their body that they are ashamed to talk to someone,” said Stacey.
She urges anyone who thinks they might be suffering with HS to go to their GP and “talk as openly and honestly about their symptoms so as to get a diagnosis”.
“There is plenty of help available from doctors, who understand HS extremely well. I attended St Vincent’s Hospital in Dublin where they have a dedicated HS clinic. People from all over Ireland are accepted, all you need is a letter from your GP confirming your HS diagnosis,” said Stacey.
Barry, from Parteen, was even younger than Stacey.
“It was 1988 when I developed my first painful, pus-producing abscess. I was 14 when I woke up one morning with a pain in my backside. I initially dismissed it as growing pains and thought it would sort itself out in a few days. Little did I realise just how much of a pain in the backside this would become in the following weeks, months and years.,” said Barry with black humour.
The pain and discomfort intensified over the coming days but he was too embarrassed to seek help for a long time.
“I eventually did get help and ended up having surgery on my backside, something that would repeat itself for many years afterwards. The surgeries sometimes would give me a break for a few months or years; other times the abscesses reappeared before the surgical wound had healed. They always returned at some point. Physically, these painful abscesses prevented me from playing sports I enjoyed like cycling, soccer and rugby. Mentally, they affected me greatly as I became very self-conscious about my body,” he said.
In 2006 - 18 years later - Barry developed abscesses in his armpits and they began to affect his ability to do everyday things that most of us take for granted -cooking, cleaning and dressing himself could be very difficult tasks.
“I sought additional professional help and was diagnosed with HS, almost 20 years after the onset of symptoms. In one sense getting the HS diagnosis was a relief. I learned I was not alone and that there were others with HS also. I also found it very distressing to learn I had an incurable condition, and soon after I learned about HS I was also diagnosed with depression and anxiety.”
Subsequently, Barry developed HS in his groin and he struggled to deal with this, physically and mentally.
“I soon found walking even short distances could be intolerable at times. On bad days, climbing the stairs at home was excruciating. Intimate relationships with others had become out of the question for me. I became very worried for my future, my ability to work etc,” said Barry very honestly.
Around this time the former Ardscoil Ris and UL student met his current dermatologist and started medication that thankfully has worked well.
“I was referred to a plastic surgeon who tried different surgical procedures than I had had previously. I also began asking myself what I could to help my situation. I quit smoking, lost some weight and tried to exercise more. Exercise was very difficult initially but I challenged myself to do more every day.
“I have seen a huge improvement in my quality of life recently. From being unable to walk short distances just a few years ago, I now walk miles every day. Most days I also go swimming which was something I could not manage to do for years due to HS. I try and live each day to its fullest and take great enjoyment from the little things, like walking or swimming and doing these have helped restore some of my confidence, something which HS had taken from me,” said Barry, who moderates an online community for people with HS in Ireland. He recently completed a 35-mile hike in Germany, something he never thought he would be able to do due to the severity of his HS.
“You could literally throw a stone from my house to the local shop, yet just a few years ago I was unable to walk this distance due to the severity and pain of my HS. To walk over 35 miles, climbing 2500m along the way, is an unbelievable accomplishment for me and has challenged me to think even bigger.
“HS can be an emotionally as well as physically taxing illness, and now I try and live as full a life as possible. I kept a blog of my recent adventure which I hope will inspire others in my situation to aim for their dreams and to get the support they need to achieve them.”
Barry’s blog diary of his trek is available to read on the ISF hub.
The Irish Skin Foundation’s #Five17Eight campaign can be downloaded from the hub through www.irishskin/five17eight
David McMahon, ISF, said: “HS is under-recognised and unfortunately, can be misdiagnosed for years. Symptoms have been mistaken for infected hair follicles, acne, or even sexually transmitted diseases. A late diagnosis can be detrimental to a person’s quality of life, and if it progresses can become very painful and physically debilitating, which is why early intervention is very important. We believe that it should not take eight years for people to get a HS diagnosis. The Irish Skin Foundation wants to raise awareness and to create a positive dialogue to take the mystery out of this distressing condition, and to urge more people living with HS to seek the support they need.”
The ISF is hosting two community meetings for people living with HS to encourage discussion and support for people affected by the condition. The first events will take place in Dublin on April 5 and Cork on April 19. Further details available at https://irishskin.ie