Are you just finding you have been diagnosed with Klinefelter Syndrome, 47xxy or another x and y variation? One word of advice, this syndrome is a Spectrum. You might have one symptom or your might have all of them.
I found out at the age of 9 I had Klinefelter syndrome. This message was written for a man who messaged me on instagram. He had told me this was the first 24 hours of finding out and he wanted my opinion. I am 32, I do understand my parents knew before I was born, so my perspective is different. Sometimes I wonder what life would be like just getting diagnosed with Klinefelter syndrome later on.
Hello kind sir, don’t get down about being diagnosed with Klinefelter syndrome, 47xxy. You have lived 35 years of your life and now you have more knowledge about yourself than ever before. You can look back at the younger years and now connect the dots to where you struggled and also all the amazing things you have accomplished so far without even knowing you have Klinefelter Syndrome.
Now you move forward and learn about all the positive things in life knowing you have Klinefelter syndrome. You will also learn about the things the “internet” says we are not good at or the areas we might struggle more in and then you work extremely hard to counter them to the best of your ability. It’s going to take hard work but it will only increase your quality of life. Having one extra X is nothing to be ashamed of or afraid of, it’s just the next chapter in the book you are living and writing in every single day.
People all over the world are finding out daily. One thing is certain, YOU ARE NOT ALONE. There are 100,000 of guys if not millions just like you and me who are diagnosed with Klinefelter syndrome. Out of all of those people diagnosed with Klinefelter syndrome only 30% will learn about their diagnosis. 70% will live their entire lives not knowing. Although we all might be different in our own ways, we also share something that is a unique bond. Knowing that, we better make the most of our life and push forward with the things we are good at instead of dwelling on the things we are not.
If just one person diagnosed with Klinefelter Syndrome stood up, educated 10 people in his life about our cause on spreading global awareness we could help so many people like yourself find out earlier in life. The keys to break down the stigmas are teamwork and taking ownership of your diagnosis. There are a lot more positives than negatives, yet the internet concentrates on the medical aspects and we will rewrite history with our amazing qualities and positive traits.
I do understand you found out less the 24 hours ago and all of this information on google can be extremely frightening, overwhelming, make you feel angry, the “why me”, feeling confused and not able seeing the light on the other side of the tunnel. There are thousands of people that have felt this exact way. The stomach dropping like going on some crazy roller coaster while it’s raining.
With all of that said, there is a bright light shining down the dark tunnel pulling you towards it. Turn your head lamp on and start the journey forward in the right direction and you will enjoy life more then ever before. You might just want to bring extra batteries on your journey.
The wonderful thing is we have Testosterone Replacement Therapy. Many of us do not make enough testosterone or any at all and we need this extra help to feel more alive. There is a scale of 200 being the low and 800 is the high and most of us try to be around 450-700. I’m well below 200 when I miss my injection. I’ve been using the testosterone injections since the age of 13.
I’ve tried the gel but it never really worked for me and putting it on daily was a disaster. I would always forget to bring extra bottles with me on trips or with me in the great outdoors. Not sure if bears like the smell more than mosquitoes. Also my insurance wouldn’t cover it and the out of pocket cost was insane.
If there are thousands if not millions of men with this, each person’s body reacts differently to it. There is a spectrum of the traits and you might have one or you might have all of them. There are lots of forms of testosterone out there depending on what country you live in.
The majority seem to be the injections and the Gel.
Asking your doctor can be a hit or miss when understanding Klinefelter syndrome. It depends if he/she has the knowledge on it. Start teaching yourself about Klinefelter syndrome, I know lots of guys and parents who know WAY more information than most doctors know about it. I think educating yourself is extremely important and accepting who you are. If your doctor can not help you he/she should be able to recommend an endocrinologist to help you get the right treatment you need. Here are some helpful resources.