An Irish man who was misdiagnosed for more than twenty years revealed that he has finally found some relief through medication and lifestyle changes after missing out on some of the most important years of his life.
Barry McGrath (41) was diagnosed with Hidradenitis suppurativa after spending two decades coping with clusters of painful, oozing lumps on his backside and beneath his armpits which forced him to quit sport and limited him when it came to forming romantic relationships.
“When I was 13, I developed a painful, tender lump around the backside area that used to ooze pus and blood. I didn’t know what was going on,” said Barry speaking to The Anton Savage Show on Today FM.
“I tried to hide it from friends, family for as long as possible. It got progressively worse until it became several lumps.
“My parents discovered blood on my clothes and on my underwear. I had been hiding my underwear in the weekly wash. My mum eventually spotted it. My underwear used to be very heavily stained.
“I hid it from them for the best part of a year and they eventually sat down and talked to me about it and they encouraged me to go to the GP.”
Sufferers of Hidradenitis suppurativa are frequently misdiagnosed with sexually transmitted infections and when Barry approached his GP about the issue, the doctor questioned him about his sexuality.
“The doctor was perplexed about what he saw. At the time I was questioned about my sexuality in a roundabout way. That may seem strange now but a lot of people get misdiagnosed as having a sexually transmitted infection with this condition,” he said.
“I went in there for help and I felt I didn’t get much help. He was pretty honest about it. He said he didn’t know what was going on and he referred me to a dermatologist. I eventually did get to see a dermatologist a skin specialist in the area.
“They suspected another closely related condition called Pilonidal Sinus I was referred for surgery to have the affected area cut out from my backside when I was 15,” Barry said.
However, Barry revealed that his first experience with surgery made him lose hope as the procedure was poorly explained to him and he wasn’t prepared for the impact of a skin graft.
“I went in for surgery and it was a traumatic experience. Nobody had sat me down and talked me through the process of what was going to happen. When I discovered they had effectively cut rashers out of my backside I was shocked to say the least.
“It was a gruelling experience that left a bitter taste in my mouth. I didn’t want to go back. The problem resurfaced very shortly afterwards. I didn’t want to go back based on my experience the first time around,” he said.
Barry continued to suffer with the condition throughout his teenage years and his twenties and revealed that he was too embarrassed to consider physical intimacy except during times of brief relief.
“I kind of wrote that off and when I look back now I realise I might have missed out on some of the best years of my teenage life because I was very shy and embarrassed about this. I didn’t want to go through the whole process of explaining to someone what was going on. I didn’t know myself what was going on.
“There were periods when I got respite from it and I did go back to getting more surgeries. Generally speaking the surgery would help me get a year or two of relief and I went out and enjoyed myself like any youngster did. I always feared it would come back and it always would come back,” he said.
After decades of suffering, a change in tide came for Barry when he sought the help of a new GP, who was able to identify Hidradenitis suppurativa by just noting his symptoms.
“The condition had spread to my armpits at that point. I found simple tasks like shopping or cooking very difficult. I couldn’t raise my arms above shoulder length. It was extremely difficult. At that stage, I went to a GP in a new place. That was my first stroke of luck and he diagnosed HS straight away.
“They don’t know what causes it. They have identified some genetic factors, hormonal factors and environmental factors that are thought to contribute to it. What appears to apply to one person might not apply to another. Only one to two percent of the world’s population have this.
“I was referred straight away for surgery and I got to see a plastic surgeon. My condition was pretty advanced at that stage. About the size of my hand with my fingers extended that was the size of [the cluster] beneath my armpit. It was a cluster of about seven separate boils.
“These were cut out and I got a skin graft,” he said.
Although Barry’s condition cannot be cured, the 41-year-old revealed that medication has made a “tremendous” difference to his life throughout the last five years.
“Just in July the first approved drug treatment for this condition was announced by a pharmaceutical company. This is great news for the community.
“I’ve been on a drug that’s very biochemically similar to this for about five years and it has made a tremendous difference to my life,” he said.
“The surgeries in combination with the drugs and some lifestyle changes I have made have appeared to make a difference.
Following his diagnosis, Barry revealed that social media has been a huge coping mechanism to help him cope with HS, and he has connected with people all around the world who suffer from the condition.
“The past couple of years, through Facebook and other social media outlets, I have found talking to other people who have this condition as a great means of support. It’s very therapeutic.
“I don’t believe that people should suffer in silence with this condition. It’s one percent of the population that suffer from this so why should we suffer in silence?”
The Irish Skin Foundation has launched a campaign to raise awareness for Hidradenitis suppurativa.
For more information visit: www.IrishSkinFoundation.ie/HS