Hello, My name is Max, and this is my story. You can find me here on Instagram.
Two years ago today, I was diagnosed with Klinefelters Syndrome or XXY. Most of you probably have no idea what this is, and it is one of the most common chromosomal abnormalities among men. Roughly 1 in 500 – 1000 males have it, but only 25% of men who have it get it diagnosed in their life.
So what does XXY mean? The average male chromosome count is 46 XY and 46 XX for females. I have 47 XXY, and I have an extra X chromosome. I did not inherit this from either of my parents. It is an unexplainable random error that happens during conception.
I found out through a Karyotype blood test, which examines the chromosome count in your cells.
That extra X that I have causes a few problems, not everything is terrible; there are some positives too. The pituitary gland in my brain controls hormone communication in the body. It sends the signals, but they aren’t received in some places. So for me, this meant my body was producing testosterone, but not enough.
Where testosterone would be increased, those parts weren’t receiving the information. So I had been living my life with low testosterone. Testosterone is measured between levels of 8 – 35. I was at a 17 at first, so pretty low. And because of the lack of normal testosterone levels, my body did not develop properly. I am on TRT (testosterone replacement therapy) now and will be for the rest of my life, which allows me to be on normal levels. Even if you got diagnosed with Klinefelters in utero, there is nothing doctors can do to stop the outcome of the lack of testosterone.
And one of the outcomes of this can be infertility. This is the hardest thing for me to grasp in this journey. The fact that I am unable ever to have children of my flesh and blood. I am infertile. Most men with Klinefelter syndrome are. Many men get their diagnosis when they are trying to start a family. But some can have kids through IVF and other ways.
But after some testing, it won’t work for me. It’s a crushing thing to learn about yourself. Dreams that I long for are broken. It’s been very difficult to accept, knowing that part of you is broken.
But I know God created me this way for a reason.
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.”
Psalm 139: 13-15
Overall I do feel somewhat different since starting TRT. The biggest change is my increased confidence in myself. I used to be a pretty shy guy, and I still am in some ways, but it’s getting better. It didn’t solve everything. Though, I still am tired all the time. I seem unable to have as much energy as most people, which might be chronic fatigue on some level. I also still struggle with depression and anxiety, but it’s gotten better over the years. I’ve been working hard to try and be a better version of myself, like going to the gym and therapy. It has made an impact and has made me start to feel a bit better.
I’m thankful I discovered this now rather than later in life. It saved me from a lot of grief in the future, but it’s still something I’m grieving over. If you have any questions, feel free to ask me. The first two photos were from around when I was first diagnosed, and the last photo is a more recent photo of the progress I’ve made, specifically with the gym and TRT.
Max, thank you for sharing your story. It gives me the courage that i may share mine at some stage too, in the not too distant future. The struggles are real, but my diagnosis helped me come to terms with why my life turned out the way it did and apart from the occasional dip, I am happy to have my diagnosis of KS. Well done on the gym work, looking good bro 👌healthy body = healthy mind
Good job Max, thanks for the inspiring story and making me feeling hope for my little boy who’s diagnosed XXY before he come to this world. But I believe there’s reason for having him with us. You give me and my wife a big encouragement. Thanks again.
Thanks for sharing your story! As a mom of a nearly 3 year old beautiful XXY boy, I feel empowered to get my son’s story out as a way to help educate others like you.