N ow 46 years old, Gareth didn’t realise he was XXY until 2017, when he and his wife were trying to have a baby. After several failed attempts, it became clear that something was not working, and so Gareth went for a semen analysis. When the results came back, he was in disbelief.
“I was like, ‘What? What do you mean zero sperm count? Like, nothing? How can you mean nothing?’” Gareth remembered. He got a second test to confirm that the lab hadn’t made a mistake, and sure enough, the result was the same. Although baffled by the news, he was determined to find a solution.
“We were referred to a consultant urologist, and I went in very open-minded, thinking, ‘You know what, I’ll change my diet a bit, I’ll cut back the booze, I don’t smoke, I don’t vape, I don’t do drugs. I’ll take a load of vitamins, and it’ll be grand’,” he said.
However, upon meeting the consultant, his optimism was flattened by a wall of hostility. “He didn’t even examine me. He just looked me directly in the eyes and he said, ‘Gareth, it doesn’t work downstairs. You need to get over that and move on.’ To this day, there is a gap in my memory. I don’t remember what happened. I would best describe it as an out-of-body experience… My hearing went, I was focusing in on these little money plants in the background, and we left there and I completely broke down in the car park.”
Reflecting on how the consultant handled the situation, Gareth expressed, “He didn’t give a f*ck. He just didn’t care. No empathy, no communication skills.
“I then entered a very deep depression. I began drinking more and more alcohol, I would stay up to all hours playing on my Xbox – there was a game called Assassin’s Creed, and I used to sail around online blowing the sh*t out of everyone. I got really good, everyone got annihilated,” he laughed. “It was pure escapism.”
While able to make light of it now, the reality was that he lost himself. He stopped running, which was one of his main hobbies, and had no interest in fulfilling his work commitments. Thankfully, his wife found another consultant urologist based in London called Jonathan Ramsay, and they sought a second opinion.
It was then that Gareth received a karyotype test, which revealed he was XXY. He described having a “sense of relief”, knowing that there was an explanation beyond his control as to why his wife couldn’t get pregnant.
“It’s so common,” he added. “It’s the most common chromosomal condition in the world to affect [cisgender] boys and men, and no one knows about it.” While the statistics differ from country to country, it is thought that one in 500 to 1,000 newborn males are XXY, 75 per cent of whom will never be aware of it.
And Gareth hadn’t been aware of it either. Although he felt relieved, he also felt alone, and the information available at the time was all quite negative. He additionally went through multiple operations to determine if he could produce sperm, which were incredibly taxing on his health. His testosterone levels dropped dramatically, leading to severe exhaustion.
XXY people already have lower testosterone levels, which is one of the main traits. Other common traits include taller-than-average height, reduced muscle mass, less body and facial hair, extra breast tissue and small testicles. Personality-wise, they are considered to be more empathetic, thoughtful and kind, while some people struggle with language-based learning difficulties.
Ultimately, Gareth’s infertility was confirmed (but it should be noted that not all XXY people are infertile). As a result, he and his wife began the process of using a sperm donor, and after some setbacks, they eventually welcomed twins into the world in 2019.
Reflecting on his experience overall, Gareth stressed the importance of consultants and healthcare professionals exercising empathy with clients. He also criticised the Irish government for putting a VAT charge on donor sperm and eggs. Speaking to people who are XXY, or suspect they might be, he concluded: “There is support out there, like the Klinefelter’s Syndrome Association. But if you’re concerned or you feel that you could be XXY, get a blood test to see what your natural testosterone levels are – that’ll be the first thing. Then, if you still have all those other traits, get a karyotype test, because you can get TRT, which falls under the drug payment scheme. And if you get testosterone – I get an intramuscular injection – it’s incredible. It is transformative for your life.”
To stay up to date with Gareth Landy’s campaigning, visit prettyfly4xxy.com. To seek support on XXY, egg and sperm donation, IVF or fertility, check out ksa-uk.net, livingwithxxy.org, dcnetwork.org, nisig.com and ivfbabble.com.