I got diagnosed at 45 and am 49 now. I had a very rough time learning to read. I went to tech school after dropping out of university and found that I was better at teaching myself as a technician. I work at Goddard Space Flight Center in Maryland now. I have had a lot of social issues over the years but have found a few good friends which I'm thankful for. I also have found a great church family in Washington DC. Thank you, Ryan, for starting this group. I honestly don't know anyone else who has this and only know a little about the condition. Though it was a bit of a relief to find out that I had XXY because it explained a lot about struggles I've had through my life.
Thank you Ryan! My son is 20 and is a tall, handsome, creative young man like you. We discovered the KS when he was 16. The diagnosis answered a lot of questions for us. He is doing very well, in college, but still struggling. I have forwarded your video to him. He will be so happy to see these. Thank you!
Ryan you were fortunate. I was blamed for my problem that no one knew anything about. Being incontinent of urine I was hated and dump ed off at an offinage a child's prison run by nuns who hated children. They resented their parents dumping them off during the depression in the crash of 1929. There was a school adjacent to the offinage. The nuns there were decent and tried to help me. Eventually after nearly dying was returned home. I was angry I didn't die. Time marched on I was very negative and remained so for many years. Was finally diagnosed say age 17. Parents denied me testosterone they just didn't get my belligerent father thought he could beat it out of me was a military man who was never wrong. The one drug testosterone given during a failed puberty would of saved me years of never ending grief. Eventually I owned my own disorder got my testosterone and self inject every 14 days have been on it 51 years. a lot has changed. now a retired RN at 77 soon to be 78. Very grateful that via serendipity everything has worked out from a very rocky beginning. Despite physical problems life is good . Feeling blessed. J
i got diagnosed with an extra x chromosome just took a 6 month course at a local trade school didnt make it even a week cuz they weren’t payin attention to me and i got arc flash and also fell behind cuz i was part time so they let me go it was mainly cuz my dumbass has learning difficulties and they started me on stick lol. then week later became a custom painter that didnt work out long story but was let go from there also i struggled. it’s destroying me mentally cant find my purpose but hopefully i get treated then maybe thatll help these thoughts
Be happy you had awesome parents! My parents really had no clue and the doctors didn't seem to know much about Klinefelters at the time in the late 60's. I had a lot of problems socially and bullying in school. I still have problems socially and stay in a lot even though I know I should get out more. Currently, I'm 55 and dealing with blood clots in my legs. Be careful with your T dosage as you get older and stay active! Great videos!!
Love hearing your perspective! My son who has been homeschooled for middle school will be going to a huge high school next year. (We live in Texas.) I think he'll do fine and will find his group in orchestra and theatre. Will have to see how he handles the work; I'm not too worried. He's never had issues in learning, thankfully. My son really wants to be a police officer after school. He has a servant's heart. I enjoyed listening to your story! Keep the videos coming!
I'm pregnant and my son have it and I'm so scared for him and don't know what to do but hearing u make me feel a whole lot better thanks for sharing your story
You have no reason to be scared. He will grow up just fine and be an amazing roll model in life, while we do have our struggles but who can honestly say they haven’t struggled in life? Just provide him with the best opportunity you can and the proper treatment when it’s needed.
Thank u so much for what u said u just movtiated me cause I was thinking about giving him up but what u told me made me stronger and yes I will get the help he need when he need it thanks again
You have such an advantage about knowing while you are pregnant. The earlier you know the easier it becomes, not saying it will be easy but remember, no one is perfect. The harder you work the better you become and that’s a true statement in all walks of life. Remember things could always be worse. I wouldn’t change anything about being xxy.
Very good. I've lost connection with almost everyone because of changes Klinefelter's has done over the last 10yrs. Even though I may never talk to my living relatives/family ever again this video will help tremendously. I can not send one of myself or they won't believe me. Had always thought to be possessed by a soul of a woman until the Kabbalah Center kicked me out. Then I found out I am a Klinefelter. To everyone around me Klinefelter's Syndrome is an abomination. I am always alone
Thank you for your videos bro. These videos have helped motivate me in knowing I'm not the only person out there that feels the way I do. High school sucked for me I had almost 900 kids in my year group and had over 3300 kids total at school. So as being a different individual I got bullied heavily and with my learning difficulties also I spent more time worrying about what others thought of me. I've been searching for answers with my learning difficulties, my mood, adhd and pain for over a decade and was doing some genetic test and found out I have Klinefelter syndrome when testing for an arthritis condition. I'm 24 now Ive genuinely always struggled connecting with ppl and sharing my experiences with other people. I found that I was able to learn easier in college and I completed a diploma with some difficulties but still completed it. Wasn't until I started uni that I got kicked out because my health was declining and I had just sunk thousands into a course that I got kicked out of so that was really disheartening and tbh I've just been floating around for two years getting turned down at every job interview. I've finally started to love and find myself again after isolating myself and really working on myself and my needs, whilst in turn also styling on your channel and it makes me want to go back and do another diploma and go out and experience more and reconnect with people again because I am missing out from learning and experiencing things from others that I could learn so much about. If you want to talk more I'm happy to. Cheers heaps for everything 🙌
My middle school and highschool were horrible, no matter wt i did i felt left out and different that all others, back then didnt understand why i had horrible body (especially gynom.) Now i do. As for my education i took longer time to study and memorize than an average person.
+TheDarkleopard - You have my heartfelt sympathies. Your words struck chords on this end. I am a normal XY male who happens to be gay and have a minor physical disfigurement, both of which were bully magnets during my middle and HS years. The bullies knew about me before I did. I had to be so self reliant that I was voted most individualistic in my class and graduated with honors. But some people can be so cruel for the slightest reason. So it's not hard to imagine what you went through. If you'd like to chat/share experiences, drop me a note. Take care and hope it's all better for you now.
My son has 49xxxxy syndrome, he is 17, all the symptoms are more severe ADHD and anexiety hypertolerism and dipperesion He is very shy and mischievous He gets strokes of feelings of mischievousness and wide nose , very low self esteem very impulsive and hyoerpigmentation due to adrenal insufficiency, khyphosis and loss of lumbar lordosis, severe bone and muscke loss , hypogonadotropic hypogonadism, Growth harmone deficiency and he is a good biology student. We are from India
Hi, I'm new to your channel. So my question have You always know that You are XXY? The reason I ask is because I did not actually know for certain that I was I have Klinefelters Syndrome until recently about a year ago. I am 67 now. Many of the things that you have talked about just now has helped me so much! I have never been lost its one of my unusual abilities. Thank Thank You so much! I must go now. Thank You so much!
My mother found out when she was pregnant with me. I learned at 9 when they told me. But its only been until the last 3 years that I have really learned about XXY.
My brothers was acting different and by different i mean getting mad easily and shouting at my parents, but he was like this before it just got worse. He also began to want money more than he needed, talking about drugs having nad friends who just used him all this began after he graduated high school which was in 2012. In 2013 he tried to commit suicide just because my parents weren't giving him the money, but I personally don't believe that klinefilter was its cause. Anyway after that incident of trying to commit suicide they took him to a psychiatric and they admitted him for one month, one year has passed when he was diagnosed with xxy after knowing what he had he started hating himself because the doctor said he couldn't have a normal marriage lifestyle, couldn't have sex, nor have babies. And so that broke his confidence and heart at the same time. Marriage in the Arab world is very important, if someone didn't get married that means tha person has something wrong, and they treat him/her bad like bullying but mentally not physically, and that's exactly what happened to my brother infact his own siblings were making fun of him and still are to this day . Now he's 25 turning 26 in December and he's suffering from anxiety and bepression he also wants to get married but is scared of the behavior of his spouse that she will make fun of him like everyone else, he often says that he won't be able to please her in bed like what the doctor said. Please tell me that everything the doctor said about klinefilter, has nothing to do with it Thank u so for your videos they helped alot
I guess you were lucky you had been diagnosed and put on TRT by that time. I really suffered with the physical (and to a lesser degree mental) immaturity.
Hey! I am 17 and i think i have the XXY syndrome. My parents don't know about this and i don't plan on telling them. I have the similar body type as most XXY patients but my mind has always been sharp. I was always a top student at school and am currently preparing for a national science exam (the preparation is going very well btw). I also have noticable facial hair. I have always been hyperactive(another reason opposing XXY). Can you please tell me more? Do i have the syndrome or am i just too cautious? Thanks! PS: I was on the school soccer team almost every year and my height is almost 1.8metres. If it matters, my penis size is okay and i have no problems producing testosterone. My testes are not small. I have no emotional issues at all. I fit into society well. No speech issues. I am a good speaker at school btw. It's only the body shape i'm worried about. I could have a wide waist that would be ok after working out but anyway.
Middle school and high school were hell, especially the mandatory gym classes and showers. I won't look at my own body to this day if I can help it. Diagnosed in my 50's. Decided not to get testosterone therapy. Also have epilepsy and gray matter heterotopia. Other than all that I've had a smashing time.
There are studies with low level testosterone treatments where the levels given are not enough to induce puberty. I heard that the results were positive particularly with mental outlook.
I was wondering if you had normal hair growth (beard and on chest ) deep voice naturally after puberty or did that all develop after taking testosterone? Btw You are an amazing person love that you’re confident and educating people👏🏼
@@VrickzGamer Seems to me that symptoms vary widely as before childhood testing started in the 90's, most people with this condition would never be diagnosed. I don't think that late body hair growth and body shape alone would be indicative but you can always ask your doctor to see if a karotype test might be reasonable or even covered by your insurance.
I think it's unusual but some mosaic Klinefelter syndrome patients are fertile enough to naturally have children, depends on how many cells don't have the chromosome abnormality and where they are. Fertility medicine has come a long way so even if you have full blown Klinefelter, it's worth seeing a fertility expert and indeed for many men born before they started childhood karotype testing, they only find out if they have Klinefelter a when they see a fertility expert.
My Husband has opposite effects then what most KS has. Are they a study on people with KS? We are going thru IVF now and I haven't seen a percentage on having kids ?
Does anyone have any tips on boosting energy levels without doing the testosterone shots. Got nothing against T just want to explore every possible option first. I've just felt so drained for years. And I can spend an entire day eating and won't gain any energy from it. I always feel tired and drained and that obviously has impact on daily life. I still go by my day and do as much as I possibly can but I want to feel energised again. I don't want to feel like I'm half dying all the time.
Get on T! Think of XXY as gas for your car. Running on fumes you will never be able to drive far, same with T. Our bodies dont make it or make very little so we have to fill up our tank in order to feel good and drive far!
Maybe have your glucose levels tested. You get energy by insulin allowing glucose to be absorbed by your cells so diabetes could explain your symptoms, when first starting on insulin, many people described it as day and night as to their energy levels. Then there's Congestive Heart Failure secondary to cardiomyopathy which was a problem with high school football players dying on the field back in the 90's, CHF really does a number on your energy levels as it's simply your heart not being able to meet your body's needs, the Brazilian doctors called it Heart Insufficiency instead of Heart Failure as we do in North America.
300 units of drinks? If you mean 300 servings/shots of alcohol a week, then that is WAAAAY too much alcohol and you can develop serious alcohol dependency and have a higher chance of having health complications or death when withdrawing from alcohol without medical support. Please educate yourself on the risks and consequences of alcohol addiction!
Additionally, you might be experiencing delirium tremens and should consider reducing the amount of drinks you have overtime (if you have a severe alcohol addiction, you need to seek a doctor on this)
I got diagnosed at 45 and am 49 now. I had a very rough time learning to read. I went to tech school after dropping out of university and found that I was better at teaching myself as a technician. I work at Goddard Space Flight Center in Maryland now. I have had a lot of social issues over the years but have found a few good friends which I'm thankful for. I also have found a great church family in Washington DC. Thank you, Ryan, for starting this group. I honestly don't know anyone else who has this and only know a little about the condition. Though it was a bit of a relief to find out that I had XXY because it explained a lot about struggles I've had through my life.
Thank you Ryan! My son is 20 and is a tall, handsome, creative young man like you. We discovered the KS when he was 16. The diagnosis answered a lot of questions for us. He is doing very well, in college, but still struggling. I have forwarded your video to him. He will be so happy to see these. Thank you!
Awesome thank you for the support and sharing the videos with your son!
Ryan you were fortunate. I was blamed for my problem that no one knew anything about. Being incontinent of urine I was hated and dump ed off at an offinage a child's prison run by nuns who hated children. They resented their parents dumping them off during the depression in the crash of 1929. There was a school adjacent to the offinage. The nuns there were decent and tried to help me. Eventually after nearly dying was returned home. I was angry I didn't die. Time marched on I was very negative and remained so for many years. Was finally diagnosed say age 17. Parents denied me testosterone they just didn't get my belligerent father thought he could beat it out of me was a military man who was never wrong. The one drug testosterone given during a failed puberty would of saved me years of never ending grief. Eventually I owned my own disorder got my testosterone and self inject every 14 days have been on it 51 years. a lot has changed. now a retired RN at 77 soon to be 78. Very grateful that via serendipity everything has worked out from a very rocky beginning. Despite physical problems life is good . Feeling blessed. J
I got diagnosed at 25. 33 today. I have a Bachelors degree and I work as a welder in NJ if anyone wants to talk I will listen.
i got diagnosed with an extra x chromosome just took a 6 month course at a local trade school didnt make it even a week cuz they weren’t payin attention to me and i got arc flash and also fell behind cuz i was part time so they let me go it was mainly cuz my dumbass has learning difficulties and they started me on stick lol. then week later became a custom painter that didnt work out long story but was let go from there also i struggled. it’s destroying me mentally cant find my purpose but hopefully i get treated then maybe thatll help these thoughts
Be happy you had awesome parents! My parents really had no clue and the doctors didn't seem to know much about Klinefelters at the time in the late 60's. I had a lot of problems socially and bullying in school. I still have problems socially and stay in a lot even though I know I should get out more. Currently, I'm 55 and dealing with blood clots in my legs. Be careful with your T dosage as you get older and stay active! Great videos!!
Hi it's a year later. I hope things are better for you this year and I hope you get out more xxx
Love hearing your perspective! My son who has been homeschooled for middle school will be going to a huge high school next year. (We live in Texas.) I think he'll do fine and will find his group in orchestra and theatre. Will have to see how he handles the work; I'm not too worried. He's never had issues in learning, thankfully. My son really wants to be a police officer after school. He has a servant's heart. I enjoyed listening to your story! Keep the videos coming!
Thank you for the support.
I'm pregnant and my son have it and I'm so scared for him and don't know what to do but hearing u make me feel a whole lot better thanks for sharing your story
You have no reason to be scared. He will grow up just fine and be an amazing roll model in life, while we do have our struggles but who can honestly say they haven’t struggled in life? Just provide him with the best opportunity you can and the proper treatment when it’s needed.
Thank u so much for what u said u just movtiated me cause I was thinking about giving him up but what u told me made me stronger and yes I will get the help he need when he need it thanks again
You have such an advantage about knowing while you are pregnant. The earlier you know the easier it becomes, not saying it will be easy but remember, no one is perfect. The harder you work the better you become and that’s a true statement in all walks of life. Remember things could always be worse. I wouldn’t change anything about being xxy.
Very good. I've lost connection with almost everyone because of changes Klinefelter's has done over the last 10yrs. Even though I may never talk to my living relatives/family ever again this video will help tremendously.
I can not send one of myself or they won't believe me.
Had always thought to be possessed by a soul of a woman until the Kabbalah Center kicked me out. Then I found out I am a Klinefelter.
To everyone around me Klinefelter's Syndrome is an abomination. I am always alone
Thank you for your videos bro. These videos have helped motivate me in knowing I'm not the only person out there that feels the way I do. High school sucked for me I had almost 900 kids in my year group and had over 3300 kids total at school. So as being a different individual I got bullied heavily and with my learning difficulties also I spent more time worrying about what others thought of me. I've been searching for answers with my learning difficulties, my mood, adhd and pain for over a decade and was doing some genetic test and found out I have Klinefelter syndrome when testing for an arthritis condition. I'm 24 now Ive genuinely always struggled connecting with ppl and sharing my experiences with other people. I found that I was able to learn easier in college and I completed a diploma with some difficulties but still completed it. Wasn't until I started uni that I got kicked out because my health was declining and I had just sunk thousands into a course that I got kicked out of so that was really disheartening and tbh I've just been floating around for two years getting turned down at every job interview. I've finally started to love and find myself again after isolating myself and really working on myself and my needs, whilst in turn also styling on your channel and it makes me want to go back and do another diploma and go out and experience more and reconnect with people again because I am missing out from learning and experiencing things from others that I could learn so much about. If you want to talk more I'm happy to. Cheers heaps for everything 🙌
Glad to help out!
My middle school and highschool were horrible, no matter wt i did i felt left out and different that all others, back then didnt understand why i had horrible body (especially gynom.) Now i do. As for my education i took longer time to study and memorize than an average person.
+TheDarkleopard - You have my heartfelt sympathies. Your words struck chords on this end. I am a normal XY male who happens to be gay and have a minor physical disfigurement, both of which were bully magnets during my middle and HS years. The bullies knew about me before I did. I had to be so self reliant that I was voted most individualistic in my class and graduated with honors. But some people can be so cruel for the slightest reason. So it's not hard to imagine what you went through. If you'd like to chat/share experiences, drop me a note. Take care and hope it's all better for you now.
My son has 49xxxxy syndrome, he is 17, all the symptoms are more severe
ADHD and anexiety hypertolerism and dipperesion
He is very shy and mischievous
He gets strokes of feelings of mischievousness and wide nose , very low self esteem very impulsive and hyoerpigmentation due to adrenal insufficiency, khyphosis and loss of lumbar lordosis, severe bone and muscke loss , hypogonadotropic hypogonadism, Growth harmone deficiency and he is a good biology student.
We are from India
Hi, I'm new to your channel. So my question have You always know that You are XXY?
The reason I ask is because I did not actually know for certain that I was I have Klinefelters Syndrome until recently about a year ago. I am 67 now. Many of the things that you have talked about just now has helped me so much! I have never been lost its one of my unusual abilities. Thank Thank You so much! I must go now. Thank You so much!
My mother found out when she was pregnant with me. I learned at 9 when they told me. But its only been until the last 3 years that I have really learned about XXY.
My brothers was acting different and by different i mean getting mad easily and shouting at my parents, but he was like this before it just got worse.
He also began to want money more than he needed, talking about drugs having nad friends who just used him all this began after he graduated high school which was in 2012. In 2013 he tried to commit suicide just because my parents weren't giving him the money, but I personally don't believe that klinefilter was its cause. Anyway after that incident of trying to commit suicide they took him to a psychiatric and they admitted him for one month, one year has passed when he was diagnosed with xxy after knowing what he had he started hating himself because the doctor said he couldn't have a normal marriage lifestyle, couldn't have sex, nor have babies. And so that broke his confidence and heart at the same time. Marriage in the Arab world is very important, if someone didn't get married that means tha person has something wrong, and they treat him/her bad like bullying but mentally not physically, and that's exactly what happened to my brother infact his own siblings were making fun of him and still are to this
day . Now he's 25 turning 26 in December and he's suffering from anxiety and bepression he also wants to get married but is scared of the behavior of his spouse that she will make fun of him like everyone else, he often says that he won't be able to please her in bed like what the doctor said. Please tell me that everything the doctor said about klinefilter, has nothing to do with it
Thank u so for your videos they helped alot
How did you guys realised that he has KS i mean why did you guys decided to take a test for him
I guess you were lucky you had been diagnosed and put on TRT by that time. I really suffered with the physical (and to a lesser degree mental) immaturity.
What you mean by physical immaturity?
Hey! I am 17 and i think i have the XXY syndrome. My parents don't know about this and i don't plan on telling them. I have the similar body type as most XXY patients but my mind has always been sharp. I was always a top student at school and am currently preparing for a national science exam (the preparation is going very well btw). I also have noticable facial hair. I have always been hyperactive(another reason opposing XXY). Can you please tell me more? Do i have the syndrome or am i just too cautious? Thanks! PS: I was on the school soccer team almost every year and my height is almost 1.8metres. If it matters, my penis size is okay and i have no problems producing testosterone. My testes are not small. I have no emotional issues at all. I fit into society well. No speech issues. I am a good speaker at school btw. It's only the body shape i'm worried about. I could have a wide waist that would be ok after working out but anyway.
Hey! What makes you think you have Klienfelters?
Maybe you just need more T
Me too but I am 15 but I am not very tall
managed to discover brother, even if here
Me too..I have wide waist and breast issues..but yeah...u gotta live 😪
Middle school and high school were hell, especially the mandatory gym classes and showers. I won't look at my own body to this day if I can help it. Diagnosed in my 50's. Decided not to get testosterone therapy. Also have epilepsy and gray matter heterotopia. Other than all that I've had a smashing time.
Time to help yourself and enjoy life. Acceptance is a huge thing with have XXY. Also TRT can be really helpful.
There are studies with low level testosterone treatments where the levels given are not enough to induce puberty. I heard that the results were positive particularly with mental outlook.
I was wondering if you had normal hair growth (beard and on chest ) deep voice naturally after puberty or did that all develop after taking testosterone?
Btw You are an amazing person love that you’re confident and educating people👏🏼
I started taking testosterone at 13 years old. I didn't have a beard till my 20s and chest hair came around 22-23
I had beard growth and chest hair but only narrow shoulders , does this mean I have KS?
@@VrickzGamer Seems to me that symptoms vary widely as before childhood testing started in the 90's, most people with this condition would never be diagnosed. I don't think that late body hair growth and body shape alone would be indicative but you can always ask your doctor to see if a karotype test might be reasonable or even covered by your insurance.
I dont know what I have, wether KS or hypogonadism. I am a man with woman features. Please enlighten me
Can Mosaic Klinfilters have children? Can they have facial hair? How is Mosaic KF different?
Facial hair depends on genetics, not just having Xxy. Mosaic means that some cells are xy and some are xxy. Non mosaic means all cells are Xxy.
How Mosaic Ks Are Differ From Pure Ks ....Plz Repli me
I think it's unusual but some mosaic Klinefelter syndrome patients are fertile enough to naturally have children, depends on how many cells don't have the chromosome abnormality and where they are. Fertility medicine has come a long way so even if you have full blown Klinefelter, it's worth seeing a fertility expert and indeed for many men born before they started childhood karotype testing, they only find out if they have Klinefelter a when they see a fertility expert.
Are certain careers better suited for guys with with Klinefelter Syndrome? Thanks!
Most of the men love to work with their hands. We are very visual learners. Learn by doing.
My Husband has opposite effects then what most KS has. Are they a study on people with KS? We are going thru IVF now and I haven't seen a percentage on having kids ?
Look up www.genetic.org. It has a ton of information for you and your husband
Does anyone have any tips on boosting energy levels without doing the testosterone shots. Got nothing against T just want to explore every possible option first. I've just felt so drained for years. And I can spend an entire day eating and won't gain any energy from it. I always feel tired and drained and that obviously has impact on daily life. I still go by my day and do as much as I possibly can but I want to feel energised again. I don't want to feel like I'm half dying all the time.
Get on T! Think of XXY as gas for your car. Running on fumes you will never be able to drive far, same with T. Our bodies dont make it or make very little so we have to fill up our tank in order to feel good and drive far!
Maybe have your glucose levels tested. You get energy by insulin allowing glucose to be absorbed by your cells so diabetes could explain your symptoms, when first starting on insulin, many people described it as day and night as to their energy levels. Then there's Congestive Heart Failure secondary to cardiomyopathy which was a problem with high school football players dying on the field back in the 90's, CHF really does a number on your energy levels as it's simply your heart not being able to meet your body's needs, the Brazilian doctors called it Heart Insufficiency instead of Heart Failure as we do in North America.
I am got Anxiety with klinefelters syndrome and see spiders people Everywhere am I mad all am l drinking too much 300 unts a week
300 units of drinks? If you mean 300 servings/shots of alcohol a week, then that is WAAAAY too much alcohol and you can develop serious alcohol dependency and have a higher chance of having health complications or death when withdrawing from alcohol without medical support. Please educate yourself on the risks and consequences of alcohol addiction!
Additionally, you might be experiencing delirium tremens and should consider reducing the amount of drinks you have overtime (if you have a severe alcohol addiction, you need to seek a doctor on this)
How did you get extended time?