Way back in 2015, I posted about Klinefelter Syndrome, a condition in which a male baby is born with an extra X chromosome, sometimes more than one extra. That results in a serious shortage of testosterone. In some cases, the issues are obvious, while in other cases, they might not find out they have it until they try to father a child and discover they can’t.
KS occurs in approximately one in 500 male births. That’s quite a few. Usually males have one X and one Y chromosome. Females have two X’s. That extra X wreaks havoc with the boy’s system. The sexual characteristics that usually come with puberty come late, if at all. They have small testicles, sometimes grow breasts, sometimes have higher voices and don’t grow facial hair. They may seem more feminine than other boys. There are other aspects of the syndrome, such as emotional and cognitive delays, personality problems, weak muscles and a tendency to develop osteoporosis and bad teeth. The symptoms can be treated to a certain extent with high doses of testosterone, but hormone treatment does not restore the ability to produce sperm.
That six-year-old post is still receiving comments. This week, Denise wrote that she and her husband had no idea he had KS until he went in for hernia surgery. The doctor asked if they were planning to have children. When they said yes, he told them it was highly unlikely because the husband had Klinefelter’s. The husband began taking large doses of testosterone to combat the KS. They adopted two kids, but the hormones turned him into such a moody, angry person that their marriage did not survive.
I had no idea this post would inspire so many comments. KS is tough. I couldn’t say so at the time, but I was in a relationship with a man who had this syndrome. From our first lunch together, I knew he was different. He had never been married, claimed to have never had sex, and he often acted like a child, even though he was a few years old than me. I kept trying to end the relationship, but he claimed he loved me and wouldn’t back off. It was only after a neighbor who often took care of him explained about the KS that I began to understand.
Over the years, my friend often called to chat, tell lame jokes, and ask how I was. We shared meals, watched movies, and played Monopoly together. When my father was dying, this man offered soothing comfort over the phone. I told him honestly that I didn’t feel the same way he felt about me, but I treasured his innocent love, even though he called too often at all hours of day and night and even though I had to tell him he was pushing too hard.
My friend had persistent heart problems. He had moved into an assisted living facility in a city north of here, but he was always “crying wolf.” One day he’d tell me he was dying; the next day, he’d claim to be absolutely fine. I felt a guilty relief when COVID made it impossible for him to have visitors. Too many times, I had been suckered into rushing to his side only to find out nothing was really wrong. He just wanted to see me. But the last time he told me he was very ill, I should have believed him.
The calls stopped coming before Christmas 2020. I called him repeatedly, but he never answered, and his voicemail was always full. When I phoned the place where he lived, they could only tell me that he didn’t live there anymore. I joined the people asking on his Facebook page: “Where are you? We miss you?” Eventually his sister called me from California to tell me my friend had died of heart disease.
It is not easy to love a man with Klinefelter Syndrome. Some seem perfectly normal while others have behavioral issues and don’t do well with relationships. They will never father your children. It’s terribly sad, especially when it comes as a surprise.
My heart goes out to Denise, Jessica, Melissa, and all the women and men dealing with this. I hadn’t expected to write about this today, but clearly there’s a need to talk about it.
Have you had any experience with Klinefelter Syndrome? Would you marry a man who had it? Let’s continue the conversation.