LIVING DEFINITION OF
We believe that Klinefelter syndrome presents itself in many different ways across a spectrum, which can be influenced by a combination of genetic and environmental factors. Because Klinefelter syndrome falls on a spectrum, though there are many similarities, people with Klinefelter syndrome often learn, think and interact differently than others. They range from highly skilled to severely challenged, yet each person has a unique set of strengths.
Between 1-400 to 1-650 males are born with Klinefelter syndrome. Only 25% will be diagnosed at some point in their lifetime, 75% will never know. One of the most common physical traits is small testicles, usually the size of pistachios. Our bodies often produce little to no testosterone which can delay puberty, cause chronic tiredness, a lack of motivation and a low libido. It is believed that most of us are sterile and can’t father our own biological children. However, many of the men we met did not let that stop them from starting a family of their own. Common alternatives to starting a family include donor sperm with IUI or IVF, adoption, and micro-tese surgery.
Beyond the typical definitions, as seen in medical references and other resources, Klinefelter syndrome to us is not some insurmountable challenge which cannot be overcome. Rather, while it does have numerous challenges at times, Klinefelter syndrome has a lot of positive traits which are often overshadowed by the challenges listed below. These positive traits include, but are not limited to, the following: kinetic, hands-on, right-brained, empathic, creative, and visual or eidetic memory. As seen in our Vision Statement, we believe that when you focus on the strengths and abilities of a person Living with XXY, you enable people to succeed.
While this definition is more based on anecdotal evidence, gathered from observation and interaction within our community over the past several years, we intend to work to further substantiate these findings in collaboration with strategic partners.
According to the National Institute of Health (NIH), “Klinefelter syndrome affects an estimated 1 in 650 newborn boys. It is among the most common sex chromosome disorders, which are conditions caused by changes in the number of sex chromosomes” (x & y chromosomes). The signs and symptoms of this syndrome vary in severity and occurrence across a spectrum, and therefore the research indicates that “up to 75% of affected men and boys are never diagnosed.”
The NIH further states that, “Klinefelter syndrome (47,XXY or KS), is a chromosomal condition which results from the presence of an extra X chromosome in cells.” The presence of the extra X chromosomes may affect a broad range of conditions characterized by challenges including, but not limited to, social skills, behavioral issues, infertility, hormone production, low muscle tone, problems with coordination, speech delays, learning disabilities and limited problem solving skills (executive functioning), gynecomastia, osteoporosis, anxiety and depression.