Jordan is a 29-year-old man living in Hughesville, Pennsylvania. While currently experiencing unemployment due to the COVID-19 pandemic, Jordan previously worked as an electrician’s helper with his uncle. Jordan is an outgoing man with short blond hair and a quick smile. He is very open about his diagnosis and ready to share about his life with Klinefelter Syndrome.
When he was a young boy, Drew knew what he wanted to do with his life. While most young people may not be sure of their path to a career, Drew knew he wanted to be a pilot in the Navy. With dogged determination, he began to forge his path with a single-minded ambition; to sit in the cockpit of an F-14 Tomcat. However, the journey to this goal took many unexpected twists, with a surprise diagnosis of Klinefelter Syndrome, changes in plans, heartbreak, and much self-discovery.
Josh Stanhope is the father of Noah (age 3) who was diagnosed prenatally with Klinefelter syndrome (47 XXY). Josh talks about his journey of learning and understanding what a diagnosis of Klinefelter Syndrome meant.
After Noah was born, Josh and his wife Chelsea and Josh told a few family members about the diagnosis. However, they regretted the decision when one day Josh’s father held Noah and said, "I can't believe something is wrong with you.” After hearing this, Josh and Chelsea felt alone with Noah's diagnosis, and they didn’t tell anyone else for a long time.
Josh talks about how finding the community of Living with XXY helped ease their fears and better understand Klinefelter Syndrome. Now, the family is open with Noah and everyone else about the diagnosis. Being a part of the Living with XXY community has given them the support they needed to share their story with others.
Alex is a 34-year-old man with Klinefelter Syndrome living in Centennial, Colorado. He’s a gregarious, self-described ginger, with a bright smile, and infectious laugh. Having been raised in Colorado, Alex began looking for opportunities to expand his worldview after graduating from college. When he joined the Peace Corps, he was excited to be assigned to Rwanda, which is in East Africa. However, the experience wasn’t exactly what he was hoping for when Alex was struck by a series of mysterious, debilitating symptoms. Upon returning to the United States, he began a long, and at times confusing, journey to discover what was at the root of his health issues.
Anthony noticed he started to develop gynecomastia when he was in middle school. Years later between the age of 16 and 17 he was diagnosed with Klinefelter syndrome after a routine checkup with the doctor. His doctor noticed his testicle size was much smaller than kids his age and ordered a karyotype to confirm his diagnosis. Now Anthony is 20 years old, and 3 weeks out of post opp for gynecomastia surgery. We talk about what it was like going up with man boobs and how the surgery has given him a new perspective on life. Anthony says "after every thunderstorm, there is a rainbow" and you have to keep on learning and enjoying life. https://livingwithxxy.org/
Mike Christoff's behind the scenes interview from our first documentary series called "PERSISTENCE". Mike talks about his life before his Klinefelter syndrome diagnosis and how it affected him afterward. He stated that he started to become the victim, and how it wasn't until his failed marriage he learned to change his perspective to focusing on the positive.
Chelsea Castonguay is a mother with a 3 year old son who has Klinefelter syndrome. Noah was diagnosed in utero after Chelsea felt like something was off around 13 weeks and requested Noninvasive Prenatal Testing. Chelsea talks about how she was devastated learning her son would have Klinefelter syndrome 47 XXY. After Noah was born she talks about how they were fearful about telling family. At a visit with a specialist, they were told to "never tell their son he had XXY". Confused about what they were told Chelsea talks about how this consultation lead to their decision to overcome fear and open up about Noahs diagnosis. Opening up created a network of support they never had. Chelsea said she doesn't want anyone to feel alone and wants to support others just like those who supported her.
Angela Plaisance is the wife of Charlie Plaisance who was diagnosed with Klinefelter syndrome while trying to build a family together. Angela talks about what it was like from a spouse's perspective upon receiving the news about her husband's diagnosis.
In 2015, Niall started researching to find out why he had smaller testicles. After further investigation Niall was certain he had Klinefelter syndrome. When reading information about the possibility of infertility, he was gutted and stopped all research. In 2018 Niall's girlfriend Isabel pushed him to go get tested when he told her about the possibility he might not be able to have children. Niall and Isabel share their story about his diagnosis and life after. Niall and Isabel want others to know everything will be ok, to not let what you read online pull you down straight away. To stay positive, and know there is nothing you cant achieve in life. Thru their personal experience to not ignore it or avoid it and reach out for support.
Greg Brimhall and Ryan Bregante started talking shortly after Ryan made his first youtube video in 2017. After years of talking they were finally able to meet in person in October of 2020. After recording a podcast together a few episodes ago they both continued to chat.
This 50 min episode is raw, unplanned, and full of detailed information. Ryan and Greg are both fully open about their diagnosis and welcome you into their conversation. Enjoy. https://livingwithxxy.org/
Ryan now 31, learned about his Klinefelter syndrome diagnosis around the age of 10-12 years old. His parents found out before he was born. Ryan and Leah met online and dated for 2 years before getting engaged and later married. Ryan is a successful welder by trade and now works for a machine shop that paid for him to go back to trade school. He loves working with his hands, loves to hunt, fish, and spend time being a father. Ryan bought his first house in Michigan at the age of 26 and has plans to pay it off by the time he is 45. www.livingwithxxy.org
Gareth Landy is our first person on the podcast from Ireland. Gareth was diagnosed with Klinefelter syndrome while trying to start a family with his wife who also has multiple sclerosis. He goes in-depth about how he received the gut-wrenching news from the doctor and going through the long and expensive process of sperm extraction via Micro-TESE. After hitting a dead-end, Gareth remained positive. With the help of a sperm donor, Gareth and his wife went thru 3 rounds of IVF before falling pregnant with twins. He is proud to be Living With XXY and would do it all over again if he had to. He has biked the entire length of Ireland to raise money for kids with cancer and has ran 3 full marathons. https://livingwithxxy.org/
Greg Brimhall found out at the age of 15 when his family decided to switch primary care doctors. After finding out his parents told him not to say anything or talk about his condition. Two years later at 17, he ignored his parent's suggestion and learned self-acceptance. As life went on Greg pushed himself to learn more and better understand his own condition. Greg has a very good perspective about living with Klinefelter syndrome. You can find Greg on Instagram @titan_o_terrror Our website is www.livingwithxxy.org
Brandon age 36 found out about his diagnosis at the time of his engagement at 32 years old. He had a work-related accident that gave him a hernia. After the ultrasound tech noticed he had smaller testicles, he went thru testing to find out he had XXY. Brandon talks about how he just feels like any other guy out there and how XXY has not held him back from living life. They talk about their quest to enjoy life and adopt children when and if that time comes for them. Danae offers some insight from a spouse's perspective. This is our first couple on the show and we look forward to having many more.
Dan Mooney was diagnosed with Klinefelter syndrome at the age of 19 when he had a hernia and his doctors noticed his testicle size was really small. After diagnosis and due to lack of information Dan continued to live his life. At the age of 38, he realized his testosterone was under 200 and started injections once a week in his legs. Dan talks about how testosterone has helped him with his mental health and being able to build muscle. He resides in Oregon where he is a full-time graphic designer and runs his own marketing company.
In our final episode of season 1, Carson talks about her son LJ and everything she had to do to get her son early intervention. Which would eventually lead to a Klinefelter syndrome/47 XXY diagnosis. Carson started to notice her son's gross motor skill delay at 4 months and at 10 months old he had the gross motor skills of a 5-month-old. LJ just reached a huge milestone at 18 months on the day of this podcast recording. Carson talks in-depth about advocacy, awareness, and the reason she is speaking up about LJ's diagnosis.
Michael Palumbo is an electroacoustic music improviser, teacher and developer. His current activities include teaching how to make music and art with code; “Exit Points”, a monthly online concert series that streams on Twitch; and building a VR-based music synthesizer and programming environment called “Mischmasch” going towards part of his PhD. He performs regularly as a soloist and in ensembles under the pseudonym Thispatcher.
https://thispatcher.bandcamp.com (Tracks forthcoming)
All of his code: www.github.com/michaelpalumbo
Other links mentioned:
Donor Conception Canada https://dccanada.org/
2021 AXYS Family Conference https://genetic.org/2021-axys-family-conference/
Here we have Brett Jones and his mother April Jones talking to us about what it was like for Brett to get diagnosed in High School with Klinefelter syndrome. April knew something was up when Brett was in the first grade. She fought over the years and never gave up. At 17 Brett was diagnosed with Klinefelter syndrome and after his 1st and 2nd shot of testosterone, his mom says "I finally got to meet my son, he was smiling, laughing and learning to enjoy life". After many years of struggles, Brett started a career in welding and is now part of the union working in a government nuclear facility.
Richard who was diagnosed with Klinefelter syndrome at the age of 16 is now 71 years old living an incredible life in the Pacific Northwest. Richard started his career as a teenager delivering newspapers and working the night shift of a cleanup crew. After graduating from a university with a degree in business he worked his way up the corporate ladder to become a member of the board of directors of a large company as well as their CFO. He quit at the age of 52 to enjoy his life and concentrate on his fondness of stock investing and consulting. Richard is the oldest person living with Klinefelter syndrome that Ryan has met to this day. Richard and his spouse enjoy reading and international travel in their spare time. Being an avid investor Richard is proficient with technology and building spreadsheets to manage investments. You can support our nonprofit organization at www.Livingwithxxy.org
Cresta is the mother of Cole who is 2 years old and was diagnosed with Klinefelter syndrome thru a NIPT (noninvasive prenatal testing). Cresta has some incredible things to share about her pregnancy and has decided to change her career path to become a genetic counselor. She wants to be able to provide more accurate information for our community and also provide more helpful information for her son. This is a podcast you do not want to miss! www.livingwithxxy.org
Angela and David Heyde were blessed with a son 14 months ago. Angela was 42 years old when her son Adam was born. They talk about receiving their sons Klinefelter syndrome diagnosis through a NIPT or (Non-Invasive Prenatal Testing). When faced with overwhelming emotions and their doctor knowing nothing about Klinefelter syndrome, they went to google looking for answers, only to find negative and outdated information. They talk about overcoming the challenges they were faced, and Adams's bright future. www.livingwithxxy.org
Mike Christoff found out he had Klinefelter syndrome at 27 when he was trying to have kids with his first wife. Mike has a BS in graphic design and works as a UX designer. He loves to get outside into the wilderness where he lives in Utah, take photos, go hiking, and enjoy spontaneous exploring. We recommend everyone listens to this podcast who wants to better understand Klinefelter syndrome. Mikes social media can be found here: @mikemantx @redaardvark_design
Matt Tatham, father of Jack (Age 2), shares his recent journey of fully accepting and embracing Jack's unique personality & interests. Matt opens up about how his lifelong thoughts about fatherhood were limiting his own relationship with his son. Matt learned to embrace Jack's Klinefelter syndrome.
Stefan was diagnosed with Mosaic Klinefelter syndrome in 1996 at 26 years old. He has been a strong advocate since his diagnosis and has attended many conferences over the years meeting a wide range of people with Klinefelter syndrome and all different age groups. We are glad to have him on the show. Here is his website. You can also contact Stefan on Facebook.
This episode is all about nature, free play, and how it has helped Kat's son Leo who is three years old and has XXY. I began thinking over our journey and our introduction to Free Forest School. Free Forest School is an international organization where children and caregivers meet in nature with no toys for unstructured and child-led play. https://www.freeforestschool.org/ https://livingwithxxy.org/
Living with xxy is a Nonprofit 501.c.3 Charitable Organization raising awareness about Klinefelter syndrome - 47 xxy. We are here to help people all over the world learn more about this condition. By listening to our podcast you will hear voices of our community share their personal stories about overcoming challenges they faced and rising above the outdated information. More information can be found on our website. https://livingwithxxy.org/
Evan Flores was born and raised in NYC his entire life. He never left and met his amazing wife Sabrina on August 19th, 2010 After 3 to 4 years of trying to have a family, Evan and Sabrina decided to go in for testing to see why nothing was working. After testing, Evan was diagnosed with Klinefelter syndrome and was in utter shock. “How is it even possible for someone to have an extra chromosome,” he said.
Evan and Sabrina did Micro TESE and IVF in the same go and he is blessed with a miracle baby boy named Joshua. Joshua is 7 months old and thriving and Evan is his biological father.
Since Evan was born in NYC he understands that having a hustle is part of life. Selling cable door to door as his full-time job, Evan also is the owner of a clothing company inspired by God called Saved. You can feel his love for vintage clothing when he talks so passionately about it. Evans work can be found www.savedco.com
Geoff Kruck 42 years old, lives just north of Melbourne, Australia. Geoff found out the hard way he had Klinefelter syndrome. When he got married to his wife, he didn’t have an overbearing desire to have children. Geoff was just thrilled he was marrying his best friend. He thought starting a family would come naturally down the road. Geoff says "you just assume it’s going to happen for you when you’re ready." Geoff was featured in Healthy Male Australia. Living with XXY is a Nonprofit Charitable Organization
Episode 6 is a very special and unique podcast. Marci and Matt Tatham interview Ryan Bregante's parents for the first time. Richard and Rosalie Bregante share information on what it was like to raise their son who was born in 1985 when information for Klinefelter syndrome was very limited. https://livingwithxxy.org/
Andrew was diagnosed with Klinefelter syndrome at the age of 16 after waking up one morning saying his testicles were hurting. A trip to the urologist and several doctor visits later he found out why. He talks about what it was like to be diagnosed, being developmentally behind his peers, and how he caught up with life at 22. He is actively involved with raising awareness online and getting his bachelor's degree in cybersecurity.
Ryan Bregante shares what it was like growing up and going through grade school and middle school. From bulling to believing in himself and self-advocating. He also talks about how he got started raising awareness for Klinefelter syndrome and forming a non-profit organization to better help this amazing community come together to break down stigmas created by out of date information.
Taking you all back to freshman year of high school as if it was yesterday. Some key talking points are about being in an English class with 4 Japanese students, myself, and a teacher. Also how I coped with bullying due to being a slow reader. Playing sports freshman year and attending homecoming. I hope you are able to learn more about my story and journey with Klinefelter syndrome. https://livingwithxxy.org/
What it was like for Kelsey to be diagnosed with Klinefelter syndrome at 27 years old while trying to build a family. Kelsey talks about when doctors told him he would not be able to have kids, that he wasn't going to let that stop him. Even with the unknowns, emotions and anxiety Kelsey overcame the challenges of infertility using donor sperm with his wife. Today they have two amazing and beautiful children who are 11 and 8 years old. https://livingwithxxy.org/ Book mentioned by Kelsey https://www.amazon.com/Pea-that-was-Me-Donation/dp/1481157140/ref=sr_1_2?dchild=1&keywords=the+pea+that+was+me&qid=1588119366&sr=8-2
We welcome you to join and subscribe to our brand new podcast series for Klinefelter syndrome awareness. This is our introduction to what the podcast will be all about and how we will grow over time. This podcast gives the voices of our community a chance to share the spotlight. We look forward to having you. Www.livingwithxxy.org