Klinefelter Syndrome Help –
Questions and Community Feedback
These are some of the common questions we have been asked at Living with Xxy.
This feedback is from those who participate building our community and doing all they can to help raise awareness and understanding. These amazing people are helping Living with Xxy to help you, consist of: Youth and Adults living with Klinefelter syndrome, Parents and family members, spouses, doctors and teachers.
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I say we all have chromosomes that make up who we are, a woman is XX, a man is XY and I have an extra X chromosome that makes me XXY. There are various symptoms that one can have including a variety of learning difficulties, from some speech issues, language delays and muscle weakness. Our bodies have a deficiency in testosterone and a lot of us have to use some artificial type to live a more energetic life. Depending on the interest level of those I am talking to I also like to mention there are other chromosomal variations like X, XYY, XXX, XXYY, XXXy, XXXXY. I try to also mention all of the amazing attributes to them as well. That we are very visual, have amazing long term memories, function like a creative and think outside the box. We pay attention to extreme details and I refer them to Our Positive Traits or Youtube. “Ryan Bregante”
He was born with an extra X chromosome which means his brain has more information to process than you and I. It also affects his ability to process hormones so he takes medicine to help with that part. “Mom”
I just tell people it’s a condition that is in males and their body doesn’t produce testosterone. So their body isn’t as muscular and they may have other health issues or learning struggles just like any other boy may have. “Mom”
I was the either the tallest kid or the second tallest kid in my classes growing up. Then when I got to high school I was amongst a smaller group of guys who were tall. I was very skinny and had a really fast metabolism. It was hard to gain weight and took many years of practice to get coordinated.
I think this happens because we just learn different then most of our peers and our education system is set up in a way that it is really hard to fit everyone’s needs. We are visual and hands on learners. Traditional schooling and universities might not be the best fit for our way of thinking and our passions. More and more trade schools are popping up. In 10-20 years we are going to need a lot more electricians and plumbers than university graduates.
Honestly, NO. I was told by my pediatrician who I had a strong bond with at 9 years old that I had Klinefelter syndrome/XXY. Now I am 33 years old and understand my condition better than I ever have in my entire life. I think this can be a question anyone would ask themselves even if they did not have an extra chromosome. It takes lots of deep thinking to better understand who you are. This can be considered “self sabotage” too many people if you are only searching for the negatives. One of the Pain points in my life is injecting myself every 7 days with testosterone and always make sure I have my prescriptions filled. But this makes me feel myself and im only hurting myself if I cannot keep this a simple routine.
I recommend you find an endocrinologist who has some understanding or treating patients with Klinefelter syndrome/XXY and consult with him. I am not a doctor. Depending on where you live there are some great resources out there for people with X and Y chromosome variations.
Find an online or local positive support group. Remember that you were living your life before your diagnosis and do not let it define you. Meeting others who share the same experiences as you will help you better understand this diagnosis. It will help you to talk about your feelings and know that you are not alone in this journey. Second I would try and find a doctor/clinic who has patients with the same genetic condition as you so you can get the medical care you need.
The way I have made friends in the past is to first meet them in my comfort zones. This usually happens at work or doing some kind of team sport or activity where people enjoying doing the same things. Making new friends is hard for everyone even if they do not have Klinefelter syndrome. You have to be willing to say hello first or step out of your comfort zones to create conversation with others around you.
Communication is really important and showing that you care about that person just as much as they care about you. Respecting each other’s boundaries. For me, I tend to thrive in group settings with less than 10 people. Here I can really get to know someone and express interest in their life. LISTEN to others and be the last to talk. I recommend everyone read this book. How to win friends and influence people. “Ryan Bregante”
The normal (XY) male range is between 300 and 1,110 NG/DL. Since testosterone is made daily in the (XY) male body, your levels can vary depending on what method of Testosterone replacement therapy you chose. Blood levels should be taken early in the morning for accurate results.
This just depends on when you or your child were diagnosed. Many of the boys who are diagnosed before puberty, start around the age of 11-14 depending on their bodies and their blood work.
Pellets, Intramuscular, Sub Q (in fat), injectable testosterone cypionate, Sustanon, Testo Gel, nebido, 1.62% Androgel, Patch,