How do we separate ourselves from the perceptions that are already heavily influenced by outdated information on the internet? How do we influence those perceptions to illustrate who we really are? And how do we begin to break down the resulting stigma of these false perceptions and encourage people to be more open with having Klinefelter syndrome? More challenges:

  • 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.
  • Google Search– Information is very negative and only talks about health related issues and educational problems. Lacking positive information.

  • Old Images– Photos are way past their prime and depict a very small part of the spectrum.

  • Spectrum– Little understanding on the degrees of variance.

  • Lack of Research Insufficient number of clinical trials and knowledge on what to study.

  • Divided Community– Since this is a spectrum, many people argue about their differences.

  • Lacking Medical Knowledge– Very few doctors and medical teams understand our condition.

  • Educational Tools– Limited resources to help kids and adults with learning and how their brain functions.

  • Self Advocacy– Very few understand their own condition.

What is Klinefelter syndrome?


As an organization, Living with XXY models the way for our community to influence change. We are workig together to provide awareness through personal connections, reinforce positivity and influence change through strategic partnerships. Please Click Icons to learn more about some of these tools below:

Our amazing community writes about life from their personal perspectives. Each story encourages the spread of more positive awareness on Klinefelter syndrome.

Using video to help educate people on how to best advocate for themselves, on such topics as, improving social skills, testosterone and dealing with depression & anxiety.

Helpful infomation seen through the eyes of a mother who’s son was diagnosed at 12 weeks. Marci shares step by step guides on raising an EXTRAODINARY son.

Through personal connections from different generations, we can ensure that people learn how to overcome challenges they may face by listening to others experiences.