DNA Today: A Genetics Podcast #264 XXY (Klinefelter Syndrome) with Ryan Bregante
Ryan is the president and founder of California based non-profit, Living with XXY. Ryan is a 37 year-old with Klinefelter syndrome or 47,XXY. Klinefelter syndrome is the result of an extra X chromosome, affecting roughly 1 in 500 males. Ryan’s parents learned about his XXY diagnosis during his mother’s pregnancy. His experiences navigating XXY and those of the over 600 families he’s met along the way help guide and inspire the work Ryan does today.
While Ryan’s background includes work as a fine dining chef and action sports photographer, he currently spends most of his time advocating for his community through his non-profit. Living with XXY was officially established in 2019 and focuses on creating a community, spreading awareness and sharing positive traits for those with an XXY diagnosis. Living with XXY is growing everyday and has a reach of over 40 countries.
Ryan is currently traveling around the US, meeting with clinics, professors/students, other professionals and families to share the work of Living with XXY and create opportunities for connection for those with XXY.
On This Episode We Discuss:
- Basics of Klinefelter Syndrome aka XXY
- Processing his diagnosis at the age of 9 years old
- Symptoms and challenges that people with XXY experience
- How symptoms can differ for people who are mosaic with XXY
- Taking testosterone
- Typical way of learning of the XXY diagnosis
- XXY affecting about 1 in 500 babies assigned male at birth, but historically, it’s been underdiagnosed (only 25% diagnosed in their life)
- The effect of NIPS changing how many people are diagnosed with XXY
- Debunking myths about XXY
- Positive traits many people with XXY have in common such as being “right brained”
- Support and resources “Living with XXY” offers to families and individuals affected by Klinefelter syndrome
- How “Living with XXY” engages with the medical community to promote more accurate understanding and care for individuals with XXY
- The global reach of “Living with XXY” with a presence in over 40 countries
Links mentioned during the episode:
Living with XXY Resource Sheets (Kira’s Fav she gives to patients)
Strategies and advantages of early diagnosis in Klinefelter's syndrome
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