A message to men who just found out they are diagnosed with Klinefelter Syndrome, 47xxy and any other x and y variation. I do not know the feeling as a found out at the age of 9 but 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.
Hey don’t get down about being Diagnosed with Klinefelter syndrome and 47xxy. Think about it this way, 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 it. Now you move forward and learn about all the positive things in life knowing you have 47xxy. You also learn about the “side effects” 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 called “My Life”.
I am 32, I do understand my parents knew before I was born and they told me at 9, so my perspective is different. I ponder from time to time what life would be like in other people’s shoes who are just getting diagnosed.
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, 47xxy. Although we all might be different in our own ways, we also share something that is a unique bond, a brotherhood is what I like to call it. 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 47xxy man stood up, properly 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.
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. 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 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 if we are lucky. I’m well below 200 when I miss my injection. I’ve been using the testosterone injection my whole life. 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. I also date girls and the gel gives them a high risk for having it transferred, thru bedsheets for example. Also my insurance wouldn’t cover it.
It’s back to there being 100,000 of men with this, each person’s body reacts differently to it. There is a spectrum of the traits. There are lots of forms of testosterone out there depending on what country you live in. Depending on what country the majority seems to be the injections and the Gels.
As far as asking your doctor, It depends if he/she has the knowledge on it. I would start teaching yourself about Klinefelter syndrome and 47xxy as 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. Do blood work to find out your T levels, vitamin D, Prostate level thru blood work, not the finger hahah! And maybe ask about having a bone density scan, I’ve never done one though but I know guys who have. Let me know if there is anything else I can help you with.