How My Brain works with Klinefelter syndrome

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  • เผยแพร่เมื่อ 21 พ.ย. 2024

ความคิดเห็น • 246

  • @Tomioko912
    @Tomioko912 8 หลายเดือนก่อน +12

    The world needs more people like you my friend. You are a force for good on youtube and your videos are helping people. God bless you!

  • @paullimon2152
    @paullimon2152 4 ปีที่แล้ว +31

    I completely agree with your analysis of the way our brains work. I am 55 and have been dealing with this Syndrome since I was 21 when I could not get into the Military. It has been challenging. Thank you for creating your organization.

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว +1

      Hey Paul, I’m Rick, you cope with the unknown, you move forward, not back…. You can do anything you want, just put your mind to what it is you enjoy… For some odd reason I love numbers, not sure why, but that’s how it is… we maybe int he same basket, no kids, somewhat heavy and can’t have kids…. Blessing in disguise? Could be, one never knows… I hear all these Dr’s out there basically saying I can have a normal life, sorry to say, but fuck them, you make like what you make it!! Cheers brother, I know exactly what’s going on with you…

  • @syx8op
    @syx8op 2 ปีที่แล้ว +35

    You made me cry wtih this video. I could never explain to someone else, even my own wife my thought process or visualization and you summed it up in like 2 senteses. I just learned about this syndrome today and I'm like 99.99% sure I have KS. I'm getting a bloodtest for a surgery I'm having soon. Im going to get tested for KS, man I really cant thank you enough for this video.

    • @LivingwithXXY
      @LivingwithXXY  2 ปีที่แล้ว +4

      Of course! Glad to help.

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว +1

      You need to stop feeling sorry for yourself, this wasn’t your fault, this was a chromosome imbalance of your folks…. There isn’t anything we can do when this shit hits the fan… I believe some of the video was correct, but not all…. Not sure why you would have surgery to find this out, just have to go “unload” in a cup and they will tell you, yeah, that was different…. Not like the movies…. But, I have XXY as well, you need to focus that this is how it is and maybe with medical science you can conceive a child. Fingers crossed. I was in your position 20 years ago and that ended in a divorce because I could have kids and the ex-wife wanted kids, nasty time. But over the years you learn to understand XXY and more forward. I’ve been married for the past nine years and no kids, sure, but that’s me. You can do what ever your put your mind too and never, ever, let anyone tell you different! Cheers brother….

    • @hamdankhan9424
      @hamdankhan9424 11 หลายเดือนก่อน

      ​@@richardbrown2348iam 19yo male i have all symptoms but iam confused that can KS men ejaculate semen or they have sexual desire

    • @AlexSR__
      @AlexSR__ 7 หลายเดือนก่อน +1

      Hey bro, so do you have KS?

    • @trusted5029
      @trusted5029 7 หลายเดือนก่อน

      any updates? have you been diagnosed with XXY?

  • @DavidCesarVera
    @DavidCesarVera 2 ปีที่แล้ว +9

    Thank you SOOO much for sharing all of this with the world!! I thought I was the only one who operated this way. You are very appreciated!
    -Fellow XXY from San Diego!

    • @LivingwithXXY
      @LivingwithXXY  2 ปีที่แล้ว +1

      You are so welcome! Shoot me an email. livingwithxxy.org/contact-page/

  • @eujiboo
    @eujiboo 5 ปีที่แล้ว +12

    The way you describe yourself is exactly the way I do things. It takes times for me to process questions even if it feels like I already know the answer. Music, audio books, movies, anything visual is my go-to. Reading is something I too enjoy but takes way longer and I'd have to re-read to get a clearer picture.

    • @genovese667
      @genovese667 5 ปีที่แล้ว +1

      It is just a mind set

  • @Lightbulb909
    @Lightbulb909 2 ปีที่แล้ว +13

    The knack for visual comprehension is so spot-on for me. In retrospect, it actually makes more sense to me why I have a knack for organic chemistry, since this subject focuses quite a lot on the physical structure of molecules. Most of subject matter is done through visual comprehension and remembering the shapes of molecules.

  • @botanicaloli591
    @botanicaloli591 5 ปีที่แล้ว +53

    I learn the same way as you I find, forming images in my head. Also when I hear a song it's easy to create a picture in my head that I attribute to that song . When describing things that people say I always do impressions of those people to illustrate the stories better! Thanks for the channel and new video for us with XXY man. X

    • @Garry2527
      @Garry2527 2 ปีที่แล้ว +2

      I relate to the creating pictures/visuals and attributing to the music part, always wondered how normal that is for majority of people

    • @89fault66
      @89fault66 ปีที่แล้ว

      The music one for sure whenever i listen to one song a lot, the next time i listen to it i always think of that place or memory and its irreversible

    • @luizsuarez8798
      @luizsuarez8798 ปีที่แล้ว +1

      Hi iam from india, i can't make decisions. This is my problem. Mind diversion. How we can treat this

  • @chriss.4951
    @chriss.4951 ปีที่แล้ว +4

    @0:57 "..we are very visual.." -- strongly agree! When I took my Advanced Income Tax exam for a certified accountant's program I pasted a large question-and-answer problem into my apartment's hallways and learned the sample exam question by heart. I also walked through the neighborhood and visualized sections of the income tax act as being positioned on various fences. When I wrote the exam I never had to open the income tax act and passed the exam from rote memory. -- When I describe info it's always by referring to a mental image. -- Sometimes I think I have a photographic memory. -- I think everyone else must have the same ways of processing memory as I do. -- I consider myself as having a long-term memory. Cheers.

  • @geoffh4192
    @geoffh4192 ปีที่แล้ว +4

    A well done explanation of how a XXY brain works. Great job!!!

  • @chikej2811
    @chikej2811 ปีที่แล้ว +4

    Wow i just got diagnosed last month , maybe this explains why i watch movies, and I love photography!! I love music, i hate reading

  • @Interested-j5y
    @Interested-j5y 5 หลายเดือนก่อน +4

    Holy Mackerel, that describes how I think too. I always thought that I was a dreamer or creator of thing's or even an inventor. I found out that I have KS 38 years ago.

  • @pupwolvi6368
    @pupwolvi6368 3 ปีที่แล้ว +19

    I was told by a random person on a dating site that I might have ks and he explained to me what it was and how it had affected his life personally. And a lot of things he said made sense to me. He never mentioned the things you mentioned but he mentioned the more physical symptoms. But what you are saying makes sense to me too also.
    When I learn things I’m a more visual learner. If I can watch person do it or the person can explain it to me In enough detail to where I can visualize it, it’s easier for me to learn that way. Especially if a person can guide me through as I’m doing it. When I read a book which I have no trouble doing it’s like watching a movie, though sometimes I have to read some parts over to visualize it better.
    Music wise it is a very deep spiritual soul and visual experience for me. Every sound and instrument ( digital or played by a person) of a song including the melody and the tone of a persons vocals creates a picture in my head that plays out like a music video in my head separate from the official music video. When not listening to music And if I know a song enough I can play out in my head every sound that makes up the song as if I was listening to it. Every sound Also is an energetic experience spiritual wise and I don’t just hear and visualize the music but I feel it also.
    I do the same when talking to people also I sort look away like I’m zoning out when talking to other people. I do my best to look at them enough so they know I’m talking to them and engaging while trying to visualize what I’m trying to say.

    • @jasp9661
      @jasp9661 ปีที่แล้ว +2

      Don't bother self diagnosing you'll live in limbo or in self confirmation for the rest of your life go get tested

  • @BambiPow92
    @BambiPow92 3 ปีที่แล้ว +86

    My husband and I only found out he had KS after trying to conceive, he was about 26! Oh man it’s been a journey, and all his symptoms make sense !!! Wish we knew sooner

    • @LivingwithXXY
      @LivingwithXXY  3 ปีที่แล้ว +10

      We would love to share your story. Send us an email if you would like us to share yours! Livingwithxxy@livingwithxxy.org

    • @sirgalah561
      @sirgalah561 3 ปีที่แล้ว +17

      Me too.. And at the same age.. My girlfriend and I wanted kids but nothing was happening till I found out what was wrong.. I was tested at 26 too.. Im now 56..

    • @Legendnos
      @Legendnos 2 ปีที่แล้ว +5

      @@sirgalah561 did you get treated ? Had children?

    • @sirgalah561
      @sirgalah561 ปีที่แล้ว +18

      @@Legendnos Nope.. Neither...
      I have lots of pets and motorbikes instead... 😎

    • @Msi696
      @Msi696 ปีที่แล้ว +2

      ​@@sirgalah561a little too personal question but are you attracted to men or women

  • @piotrjeske4599
    @piotrjeske4599 ปีที่แล้ว +4

    Just got diagnosed with Klinefelter after getting breast cancer as a man at 42. So many things make sense now. Wish l was just diagnosed in a different way. My life would have been much different l think

    • @LivingwithXXY
      @LivingwithXXY  ปีที่แล้ว +3

      You got diagnosed! Only 25% of men find out, so battle the cancer and time to start living your best life! You are no longer alone!

  • @chilenapromedioRU
    @chilenapromedioRU ปีที่แล้ว +2

    Super positive video!
    Thanks for sharing, wish you the best.

  • @TruthQuest4700
    @TruthQuest4700 2 ปีที่แล้ว +4

    I'm very visual and like working with my hands, and while I am a good reader, I don't comprehend much of what I read. I'm definitely a visual learner.

  • @tula1433
    @tula1433 3 ปีที่แล้ว +15

    I have KS. And am also transsexual. In my case it has benefitted me. It is very interesting to hear how you have the same visual way of thinking as me. I do the same thing when reading a book or listening to music that you do. Wow.

    • @brittanyweijers
      @brittanyweijers 3 ปีที่แล้ว +2

      Yes, I know the benefits going feminine! But it is frustrating a lot of the physicians do not understand KS neurologically. I’ve had so many psychological disorders In the past, couldn’t make sense of it anymore. By when I was 18 the docter wanted me on testosterone, I said no way Jose! I rather want hrt in Estrogen than ever taking those gross pills. 😉

    • @GenaiaVeller
      @GenaiaVeller 10 หลายเดือนก่อน +1

      Same as me, but in our cases can be very rare, but helpful at the same time, since make us look more feminine with the hormones, which is my case. But my endocrinologist told me that being transgender and xxy is still very difficult and rare to explain.

  • @BigKahuna77
    @BigKahuna77 3 ปีที่แล้ว +4

    Wow this is exactly how I think about things. I also only listen to audio books and it’s hard for me to look people in the eyes in conversation. I was diagnosed today and all the pieces are starting to come together.

  • @naturewalkwithwords
    @naturewalkwithwords 2 ปีที่แล้ว +2

    I am a dyslexia therapist and have just come across the connection between Klinefelter and dyslexia! Completely 🤩

    • @LivingwithXXY
      @LivingwithXXY  2 ปีที่แล้ว

      Not everyone with XXY has dyslexia. :)

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว

      Negative, dyslexia isn’t something with XXY…. Sure we may not be able to have kids, but negative on the dyslexia part…. Maybe some do, however as an XXY person, not in my life. Cheers..

  • @IncptnLive
    @IncptnLive 3 ปีที่แล้ว +11

    So refreshing to hear another person breakdown the similarities that we share living with KS. It’s hard for others to empathize or even understand when certain struggles occur on a day to day basis.

    • @LivingwithXXY
      @LivingwithXXY  3 ปีที่แล้ว +1

      Struggles are not the only thing :). Thanks for also understanding!

  • @Woogadahoomph
    @Woogadahoomph ปีที่แล้ว +5

    Fellow XXY friend in Australia 🇦🇺
    I do the stare off to the side while I’m talking with someone too 🥰

  • @chilimonte
    @chilimonte 4 ปีที่แล้ว +17

    same here too. didnt know its a xxy thing... nice to know. it feels good to know that there are other guys with "my way of thining" ;)

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว +1

      Welcome to the channel. Thanks for talking about having xxy.

    • @chilimonte
      @chilimonte 4 ปีที่แล้ว +2

      I was diagnosed in 1995. In the army. But no help. Only horror fairy tales. Since 2019 testosterone sub. And I feel like a new person. Some of the doctors in Germany have no idea. They refer to ancient science. From the 1960s. It is very difficult to find a doctor. It took me 25 years. Now I'm 42/43. Not too late. But late. I wish it had happened earlier.

    • @onuohachukwu1938
      @onuohachukwu1938 4 ปีที่แล้ว

      Janvonwerth1977 oh man, das macht mir keinen mut... ich war heute beim bluttest und habe angst dass bei mir nix festgestellt wird obwohl ich es haben könnte. ich hoffe natürlich, ich habe es nicht und will mir die diagnose auch nicht aufzwingen, aber es macht mir schon alles sorgen

  • @repeatviewing
    @repeatviewing 5 ปีที่แล้ว +33

    I can’t concentrate when I read so audio books are my go to. I’ve tried hard to read books but like you said I have trouble taking it in. After a few pages I have to go back and read again.
    I also have issues with job interviews. Listening to interviewer questions and articulating a decent answer is very difficult for me.

    • @LivingwithXXY
      @LivingwithXXY  5 ปีที่แล้ว +4

      Before your interview gets started you can let your future employer know that you express yourself different and the way you think. It will help them better understand how you can be added to the team and become more successful in doing your job. Might take some courage and a few tries to get it just right and it should benefit you.

    • @repeatviewing
      @repeatviewing 5 ปีที่แล้ว

      Living with XXY Thanks for responding. Good advice. I’ll try it.

    • @sachinudani2664
      @sachinudani2664 3 ปีที่แล้ว

      Me too bro

    • @sirgalah561
      @sirgalah561 3 ปีที่แล้ว +1

      Im exactly the same.. I read a few pages and uts as if Ive just looked at the words scrawled across the page, but none of it sank in.. Then I have to flip back a few pages and read it again.. Its like Im reading a book twice in one sitting.. Most annoying. That explains why I had so many problems at school.. Im 56 now and was diagnised at 26. KS wasnt known during my highschool days.. The tormenting I got from all the guys my age when someone saw me in the showers after gym class (there were no partitions in the male showers) having a little dick has been the bane of my life... I never showered again, but had to put up with being tormented for the rest of my time at school... Even a few years after school, an old school bully would see me in the street and call out " Hey Dean, still got a little pecker?" Grrr...
      Anyhoo.. Living with KS what a life challenge..

  • @lindawilson795
    @lindawilson795 ปีที่แล้ว +1

    Thank you for educating us about this condition.❤

  • @mlabrant
    @mlabrant 2 ปีที่แล้ว +18

    I was diagnosed with KS back in 1987 and went untreated for 11 years. I went through a massive depression and lost all my friends. There was no real internet at that time. I spent lots of time in libraries researching KS. The reason why I went untreated for so long was that the Endocrinologist wouldn't treat me until I was sexually active. This was never going to happen in my family. I have all the symptoms of KS. I apologize if all these statements are out of order. I don't know anyone or have never met anyone with KS. I am now 54 years old.

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      Do you have diabetes???

    • @mlabrant
      @mlabrant ปีที่แล้ว

      @neverstoplearning3451 yes. Type 2

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      @@mlabrant at what age ? And any other problem because I also have KS and I have googled and Google says that diabetes is at very risk for KS ?

    • @mlabrant
      @mlabrant ปีที่แล้ว

      @@neverstoplearning3451 I have been diabetic for the last 21 years. I am 56 now.

    • @hamdankhan9424
      @hamdankhan9424 11 หลายเดือนก่อน

      ​@@neverstoplearning3451same with me bro i have all symptoms of KS but the question that confuses me is kinda personal idk if mens with KS have sexual desire or not

  • @Atarahkingseal
    @Atarahkingseal 3 ปีที่แล้ว +4

    OMGRAVY OMGRAVY I'M LITERALLY FUCKING IN TEARS WITH GOOSEBUMPS!!!! My 55 year old husband just recently discovered that he has xyy Jacobs syndrome, and he has struggled our entire 14-year marriage of course and much farther back in his life with all of the symptoms thereof and his family had lied to his whole life we've recently discovered and the only way we came across it is because our daughter has so many genetic mutations that come from it that are literally one-of-a-kind they have never seen occur with a female baby being born from a Jacob's syndrome man and we have been desperately researching everything at least I have because I happen to be a brainiac when it comes to reading and words I'm a big word nerd and I want to help my sweet husband more than anything in the world he's so desperate for breakthrough and he wants to learn and with the extreme dyslexia and ADHD and stuff it's been too much now we understand why when it comes from and I just really trying to work with my beloved husband in little girls and you have just help him put into words what he couldn't find worse or and I think I would hug you for a week if I met you face-to-face right now thank you for this I'm going to be following your videos closely do you happen to know if there were any other guys out there doing xyy Jacobs syndrome type stuff like what you're doing for klinefelter's syndrome

  • @SpeedJetsUK
    @SpeedJetsUK 2 ปีที่แล้ว +2

    Brilliant video I’ve Klinefelters from birth . You great at explaining and informing everyone.

  • @aafdsfdsfds
    @aafdsfdsfds 2 ปีที่แล้ว +3

    What were your challenges at school level? Did you go through with them easily? Can you please make a video for kids who are in schoo/high school that can help parents to over come the challenges?

  • @tdevergreenparent7491
    @tdevergreenparent7491 28 วันที่ผ่านมา

    KS guys PLEASE look into vision therapy if you dislike reading. It’s a gross motor/muscle coordination issue that can be dramatically improved with vision therapy. My son jumped 4 grade levels in reading after weekly therapy. He’s a high school senior now at the top of his class. We didn’t even understand how inefficient his reading was until they had a laser track his eye movements across the page, and it showed his eyes backtracking and bouncing all over the place, even though it wasn’t visible to us. No wonder reading was no fun for him.

  • @roguephilosopher2465
    @roguephilosopher2465 ปีที่แล้ว +8

    Hey there! I am currently 20 years old and I was diagnosed with XXY before I was born. I’ve been able to do sports in middle and high school in track, cross country, and swimming. However, as soon as I hit 18, my mood took a turn with my testosterone and I was diagnosed a few months ago with osteoporosis and I may look to be diagnosed with Autism as well. Currently in college and I should be finishing college a little bit early despite those in my he academia who believed I couldn’t go to college. I have been looking into working out again to a point where I can get ripped. I am skinny and approximately 130 lbs now at 6 foot. I was able to gain 10 lbs in approximately a month and a half so (without testosterone injections) I’ve been putting together a dietary plan with calorie intakes as well as a workout plan until I get the right one where I can share my development to help others.

    • @LivingwithXXY
      @LivingwithXXY  ปีที่แล้ว

      Reach out to us via our website!

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว +1

      I hear you, I’m 48, however 9/1 49…. I’ve found out I had xxy in my 20’s… got very frustrated with this and hated the world…. but got over it some way… I’m now married to the most beautiful woman that understands me….. no kids, obviously… have a great stepson… got my pilots license, bachelors degree in business and a kick ass job… I played football in hs in my younger days, but was just like this guy on video… now, yeah, things have changed, but negative for those that can’t tell me I can live as an XY…. I’m rather heavy, however, got a new machine coming to help out with my workout… Would like to talk with others that have the xxy, never found anyone that does… Cheers partner!!!

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      Do you have diabetes???

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว +1

      @@neverstoplearning3451 I was boarder line, however lost weight and got to the clear. It’s a pain in the ass, just something you have to watch….

    • @roguephilosopher2465
      @roguephilosopher2465 ปีที่แล้ว

      @@neverstoplearning3451 don't know, I lose my insurance in a few days so I won't be able to know either. If I happen to find an affordable insurance plan, I still don't think anything more than a doctor is included. It's mostly something a specialist or endocrinologist would be good at

  • @Kikiyayazengardens
    @Kikiyayazengardens 2 หลายเดือนก่อน

    That's me. I relate. They thought I had dyslexia, or that I was autistic. I am very creative. I am a writer! And business woman.

  • @YouTubeCompilations2023
    @YouTubeCompilations2023 3 ปีที่แล้ว +6

    XXY here in Vancouver BC!
    Love your videos man, I was lost and looking for answers of why I am the way I am! I maybe just started watching you 2 weeks ago.
    Alot of the things in other videos you mention I can definitely relate to as well. And Yes, I did erase sentences quite a few times before actually figuring out what I was going to say! 😂🤦‍♂️

  • @Zenny-y7g
    @Zenny-y7g 7 หลายเดือนก่อน +4

    Good morning XXY community from the 918 ☀

  • @Versingetorix1965
    @Versingetorix1965 ปีที่แล้ว +4

    XXY here too.

  •  4 ปีที่แล้ว +6

    Thank you for what you are doing. I am almost 33. Today, watching your channel and googling a lot, I found I might be XXY (I am a very good example of XXY person).
    Btw about the visual thinking: Computer graphics and computer vision are my work and hobby. It seems I am in those very talented.
    Greetings from Germany

    • @muhammedmurshid7034
      @muhammedmurshid7034 3 ปีที่แล้ว

      Did you have children

    • @trusted5029
      @trusted5029 7 หลายเดือนก่อน

      did you get diagnosed with KS?

    •  7 หลายเดือนก่อน

      @@trusted5029 no, the test was negative

  • @aidendordoy3272
    @aidendordoy3272 ปีที่แล้ว +1

    Thank you for this video. I shown this to my wife. I struggle with this on a day a to day basis currently looking into have treatment done. As would like to have children myself it would be nice to talk to people with KS just like myself generally would think it might help

    • @richardbrown2348
      @richardbrown2348 ปีที่แล้ว +1

      Hello Aiden, I am like you, XXY kid here too… I learned of this in my 20’s, now, next week I’ll be 49… It’s a somewhat a though road out there, I understand you position. I was married and when we found out I couldn’t have kids and she wanted kids, we parted ways… However, I’ve have been, now, married for the past 9 years to a young lady that knows about my issue, we’ll call it an issue since this can’t hold you back in life. Yeah, no kids, have a stepson, but none myself.. I thought a long time ago I wish I had my own, but these days, negative, one thing, I’m too old to have a youngster running around… Think of this as a new beginning, you have your whole like ahead of you, to what makes you happy and piss on those who try and tell you otherwise. I’ve searched for answers and others that had this same issue. Pretty though since it’s not something I would bring up to my buddies… Nor have ever told them.. We grow, even with this issue, but don’t let it ever stop you from what you want in life… Sure, maybe no kids, but you can put your stamp in life in all different ways… In HS, I didn’t do well, C-D student, but passed, that was back in ‘92, since then I got a pilots license, BS degree in Business Management 3.35gpa, worked in the insurance industry since ‘99 and now a Premium Auditor, numbers, numbers, numbers, or codes…. Make sure you always tell yourself you can do it, regardless of what others may say, I say, piss on them and keep moving forward….. Cheers!

    • @yash-rd1dn
      @yash-rd1dn 3 หลายเดือนก่อน

      @@richardbrown2348 at what age you found that you have this

  • @declansgamereview6523
    @declansgamereview6523 ปีที่แล้ว +4

    Is it possible to have XXY/XYY with absolutuely no symptoms at all ? I was told recently by my mom (at age 36) that the Drs said I have an extra chromosome but I can't relate to any symptoms from the research I have done online.

  • @binoyittykurian
    @binoyittykurian 4 ปีที่แล้ว +1

    Really good information. You are really a inspiration for people like me

  • @kylelorts8367
    @kylelorts8367 2 ปีที่แล้ว +3

    Hey there, I love your videos and thought I'd share a snippet to contribute. I have KS and Aphantasia. I have never been able to visualize anything, let along "think in pictures." Unable to relive/recall all senses except for sound. I do think of myself to be a kinetic learner, one who learns by doing, but the visualization train never started for me. I realize its a spectrum disorder, and not all KS brains function alike.

    • @how_right
      @how_right 2 ปีที่แล้ว +2

      Thanks for this Kyle - I suspect I have KS, then saw everybody's comments and thought "Oh, I mustn't have KS because I have aphantasia, they're obviously incompatible." Because of your comment alone, I've resolved to go and get a blood test to check for chromosomal abnormalities.

    • @R_EVIL05
      @R_EVIL05 ปีที่แล้ว

      @@how_rightwhat’s result

  • @happypiano4810
    @happypiano4810 4 ปีที่แล้ว +4

    You just described my mind.

  • @xxblackidroxx2585
    @xxblackidroxx2585 2 ปีที่แล้ว +5

    I have this fucking syndrome. I'm on 500mg of test/week for five years. I also use a lot of cocaine for the depression that this syndrome caused me. Fucking life.

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      Do you have diabetes???

    • @VeI_2.0
      @VeI_2.0 10 หลายเดือนก่อน

      What has 500mg per week done to you?

  • @northernirishman1140
    @northernirishman1140 5 ปีที่แล้ว +8

    Alexander is my 11 yo son and we need to tell him soon about KS have you any thoughts?

    • @LivingwithXXY
      @LivingwithXXY  5 ปีที่แล้ว +3

      I am working on a video. Did you end up telling him?

    • @tb8183
      @tb8183 4 ปีที่แล้ว +8

      Please michael if you have money treat him with hormones and make him eat well and excercise I don’t want anyone to suffer as much as I did please do it for the sake pf your son

    • @judithpedreira6609
      @judithpedreira6609 ปีที่แล้ว

      Same, please help

    • @judithpedreira6609
      @judithpedreira6609 ปีที่แล้ว

      @@LivingwithXXY where can I find the video about how to go about it with the teenager?

    • @judithpedreira6609
      @judithpedreira6609 ปีที่แล้ว

      @@LivingwithXXY hello, I didn't say hello, sorry

  • @joshuamadison4947
    @joshuamadison4947 ปีที่แล้ว +1

    I would love one of your xxy tshirts

    • @LivingwithXXY
      @LivingwithXXY  ปีที่แล้ว

      Go to the store on our website.

  • @eransavyon7133
    @eransavyon7133 3 ปีที่แล้ว +1

    It was so touching to hear that you also can't read

  • @_Trakman
    @_Trakman 9 หลายเดือนก่อน +2

    Hey, I’m in NZ
    Would have been great to have met up with you!
    See the video was 4 years ago
    I’d like to connect to another KS patient and share/compare notes or life hacks to make life easier

    • @LivingwithXXY
      @LivingwithXXY  9 หลายเดือนก่อน

      Feel free to go to our website and send us a detailed message.

  • @evarriska5163
    @evarriska5163 3 ปีที่แล้ว +3

    My daughter has extra cromosom..she is 5 and half years old she says a few words but .she needs occupational therapy .she hold things for a long time in her hand she is beautiful strong but .she needs therapy . Many therapist say she will never speak .she looks normal..but she has retardation developmental

  • @sharathrao8776
    @sharathrao8776 3 ปีที่แล้ว +5

    I have problem in learning anything i always feel fatigue can trt help improve my situation.i am 36 years old i have not taken any trt so plz suggest me

  • @nursingintamil2075
    @nursingintamil2075 9 หลายเดือนก่อน

    How did you diagnose it

  • @runninggirl2765
    @runninggirl2765 2 ปีที่แล้ว +4

    Question: Does the difficulties in communicating sometimes appear as if the person can't think of the right word, or is anxious? Also, have you found that XXY men tend to have significant reading difficulties and even if the drop out rate is higher? Thanks!

    • @tumme20
      @tumme20 2 ปีที่แล้ว +1

      Well not knowing the right word or having trouble processing and reply with enough information, is sometimes giving me stress /anxious feeling.

    • @tumme20
      @tumme20 2 ปีที่แล้ว +1

      I ex. Can't read text very well unless there is illustrations to help me understand what I am reading. I need to know alot about the subject to be able to focus longer time on it. Otherwise I forget what I read. Which was very frustrating in school. So you tube videos has been much more helpful where people show while talking for me to understand

    • @ickles77
      @ickles77 2 ปีที่แล้ว +1

      I know what to say in my head.... I just can not relay it through talking. The same as I know what meanings are in my head but I can not describe in words. Also when I was at school I could never focus what's so ever.
      I had terrible grades when I did my exams because I could not process the questions.

  • @abby11118
    @abby11118 5 ปีที่แล้ว +2

    Another country heard from! Glad you're back making videos.

  • @ianplayin1508
    @ianplayin1508 2 ปีที่แล้ว +1

    I'm 37 ,diagnosed with xxy when I was 16- i still don't look people in the eyes when I'm talking to them .. and I'm not trying to be disrespectful either.. plus at my job I oversee alot of people and I catch myself doing this alot still when I'm talking directly to someone

  • @DaShizNit80
    @DaShizNit80 5 ปีที่แล้ว +3

    Do you plan to come to Melbourne?

    • @LivingwithXXY
      @LivingwithXXY  5 ปีที่แล้ว +1

      Yes, I'll be in Melbourne at the end of March. Feel free to send me a facebook message or email.

    • @MomTheEbayer101
      @MomTheEbayer101 4 ปีที่แล้ว

      Are you coming to Chicago?

  • @iaingrice2703
    @iaingrice2703 ปีที่แล้ว +1

    Bro,I'm 56 found out @ 31 has KS by accident.I can't deal with it.Its destroyed my life.

  • @stephenturner4498
    @stephenturner4498 3 ปีที่แล้ว +4

    My son has this and is 12. I feel if he could sit and talk with someone such as yourself it could help

  • @sirgalah561
    @sirgalah561 3 ปีที่แล้ว +3

    Sounds like aspergers.. I read that XXY guys have a higher chance of being on the spectrum. I can look at a person in their eyes but as soon as the look at ne I feel instantly uncomfortable and have to look away.. Also regarding reading.. Im a really good speller, but I fall down with reading, it takes me ages to read a book. And my maths skills are atrocious.. Everything odd or weird about the way I do and have done things I had always blamed it on my KS but lately Ive been reading up on the symptoms of high functioning autism or aspergers.. A lot of the symptoms of aspergers ring true to me, but I havent been tested yet.

  • @okaybeatrice8938
    @okaybeatrice8938 3 ปีที่แล้ว +3

    This sounds extremely like ADHD. Do you think it’s related?

  • @JamesRichardJohnson
    @JamesRichardJohnson 3 หลายเดือนก่อน

    Hi my name is james from uk, i was young fit full enegry lad, had lot learning problems growing up. Me and my wife want start family, did a couple of test at age 27 find i had klinefelter xxy, then there told me i couldnt have kids, then got put on testosterone 3 pumps (still on it), had issues with depression, still having issues weight, now got tremors, list gose on, sick of it, now 36 yrs, not working struggling. Just sick of it. There are days where i think it wud be better not hear. But have my wife keeping me on the striaght and narrow.

  • @alinayossimouse
    @alinayossimouse ปีที่แล้ว

    When you imagine the scene while listening to an audiobook, are the characters also detailed, e.g. have a face or is it primarily the shapes and traits of the environment?

    • @LivingwithXXY
      @LivingwithXXY  ปีที่แล้ว +1

      Depends on how well they do describing the features. But if someome gives me a few I can paint a picture of what they look like in my brain.

  • @katyache4611
    @katyache4611 3 หลายเดือนก่อน

    My son has KS, hi is only 2. But it seems to me that this thinking is inherent in visuals, and not a feature of the syndrome. I often read books and then I can’t remember whether I watched a movie or read a book, because in my perception it’s the picture.
    Please turn on subtitles, it'l be easier to understend you, I don't know English very well.

  • @sandymandy8228
    @sandymandy8228 4 ปีที่แล้ว +1

    Hello and greatings from Germany. My son is 6 years old and he can not speak very well. Did you have this problem in the past? And how can I help my son?

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว

      No Ryan did not have this problem. You can find more information on www.livingwithxxy.org

  • @aclarkk5462
    @aclarkk5462 5 ปีที่แล้ว +2

    Can a 16 year old male with normal size testicals have this

    • @B-Man-69
      @B-Man-69 5 ปีที่แล้ว +2

      Its a congenital disorder. Meaning KS happens only if you have an extra 47th X chromosome in addition to the male XY chromosomes during the early stages of embryonic development.

  • @stephenlan5450
    @stephenlan5450 ปีที่แล้ว

    Is it common for XXY teen boys to have scoliosis ?

  • @TvjinHo91
    @TvjinHo91 4 หลายเดือนก่อน

    Is final height of klinefelter syndrome is 6.1ft
    Maybe could some person who have this syndrom 5.7ft or in this interval
    They could grow taller or what ??!
    Keep going my G'S you are the best ❤🎆.

  • @mandymorgan3929
    @mandymorgan3929 4 ปีที่แล้ว +4

    My partner has this and has injections every 3 months

    • @ryancooper4618
      @ryancooper4618 2 หลายเดือนก่อน

      Can I ask a question?

    • @mandymorgan3929
      @mandymorgan3929 2 หลายเดือนก่อน

      @@ryancooper4618 sure.

    • @mandymorgan3929
      @mandymorgan3929 2 หลายเดือนก่อน

      @@ryancooper4618 yes sure.

  • @harleypiper
    @harleypiper 7 หลายเดือนก่อน

    My son Brandon when he tells us a story about an interaction with someone, he'll pretend that he's reliving the conversation by addressing a person who's there in his mind and then pretending the person is there and he'll stare like their right there in the room. it concerns me and his mom. is that normal for kleinfelter folks or does my son have a some form of schizophrenia.

  • @simranbhullar5501
    @simranbhullar5501 2 ปีที่แล้ว

    Hey man what exercises can i do to make my body look normal(male)

  • @judithpedreira6609
    @judithpedreira6609 ปีที่แล้ว

    Aren't you coming to Spain?

  • @jackben7584
    @jackben7584 4 ปีที่แล้ว +1

    Can you still gain muscle with XXY

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว +3

      Yes

    • @kaliyuga3563
      @kaliyuga3563 3 ปีที่แล้ว +2

      @@LivingwithXXY how I tried to exercize but I ended up losing weight. Im currently at around 55 kg for a height of 195 cm and I still lose weight everytime I do sport, this is getting problematic...

    • @Red5dJedi0
      @Red5dJedi0 3 ปีที่แล้ว

      @@kaliyuga3563 get some test or dbol

  • @happypiano4810
    @happypiano4810 4 ปีที่แล้ว +6

    An idea for a collaboration. 1 person with XXY, one with XYY, and one with XXX.

    • @optimist_ic
      @optimist_ic 4 ปีที่แล้ว +1

      Is there something like the others you have mentioned too. Never heard of it

  • @chilimonte
    @chilimonte 4 ปีที่แล้ว +3

    its me again. ;) I think I will make a chanell like this or ...not like this..(because you are good looking guy) . but I will make a chanell in my language (german) like "living with KS" .,...I think I have to do this because its important to say whats going on. maybe its only for my own :D

    • @onuohachukwu1938
      @onuohachukwu1938 4 ปีที่แล้ว +1

      tu es bitte. auf youtube gibts sehr wenig dazu, aber ich denke, aufklärungsarbeit zu leisten, ist wichtig, denn viele wissen nix von ihrer chromosonanomalie und nehmen einfach die ganzen symptome so hin, obwohl das nicht sein muss

  • @jennamenore1029
    @jennamenore1029 5 ปีที่แล้ว +4

    My 9 year old has a huge problem retaining anything he’s read. In fact, it’s the only thing in school that he’s behind on. Any suggestions? Thanks for the videos!

    • @LivingwithXXY
      @LivingwithXXY  5 ปีที่แล้ว +5

      maybe you can ask him to try and visualize what he is reading, Create a storyboard with pictures which he creates. Just an idea :)

    • @spacebunny6278
      @spacebunny6278 5 ปีที่แล้ว +2

      Maybe whatever he's reading sucks?

  • @miglius1992
    @miglius1992 4 ปีที่แล้ว +2

    I would say we all geneticly share same skill with xxy syndrom, to communicate using a form of image's. Am just browsing here since am almost 30 and got diagnosis this year. So what you say it's true that we think differently then most of the people, if I cuold describe it I wuold say that we are like book writers, we are always writing something.
    I see that I will need to get that self image which I don't have it. I couldn't describe my self even if I want to now.
    But what you saying I also sparsely use that as the way of communication, but it's not that officiant when you have to say something right there and now. Usely I say something stupid 😅.
    I have all the symptoms from Klinefelter, some I learned to control it by my self over my life span, but to concentrate on reading is hard and I work hard to be able to read for as much as possible and to get that into as image into my head. I wuold say knowledge gave those tools to overcome my misunderstanding over life and my way of thinking also poetcly has been changed, and that was my experience over time with out knowing what was wrong with me, I learned by my self even if it took as much time it took.
    Am trying to work with those symptoms of xxy diagnosis, so am here to see if I can put same pictures that I have experienced over my existence.
    #LivingwithXXY Do you run any discord gruop with people of xxy diagnosis ?

  • @dustinjames3787
    @dustinjames3787 3 ปีที่แล้ว

    Do I have to be taller than 6 feet to have Klinefelter syndrome?

  • @richardlongmore9301
    @richardlongmore9301 ปีที่แล้ว +1

    This sounds like me

    • @LivingwithXXY
      @LivingwithXXY  ปีที่แล้ว

      Go get your T checked, check to see if you have smaller balls.

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      Do you have diabetes???

    • @richardlongmore9301
      @richardlongmore9301 ปีที่แล้ว

      @@neverstoplearning3451 no but I wondered about that. But blood tests say no. My thyroid was a bit low but that was it.?
      I’m thinking testosterone level Mabe ?

  • @zenadoyle5566
    @zenadoyle5566 ปีที่แล้ว

    Can females have this to my eldest have this.

  • @taufiqhidayat1504
    @taufiqhidayat1504 4 ปีที่แล้ว +3

    Too many sign on me man

  • @fay4715
    @fay4715 ปีที่แล้ว

    Hello I was wondering if anyone could help me since I cannot get a test right now, but I am nothing like this guy's mind My penis is well sized my testis from home measurements have over 15ml of volume but I have the femine fat distribution and gyno, however I gain muscle easily and have decent amount of hairs on my body but I do feel fatigued. I think I could just be affected by body fat causing estrogen and other bad lifestyle factors.

  • @anthonysanchez885
    @anthonysanchez885 4 ปีที่แล้ว +3

    But you have a beard, I literally don’t have any facial hair man feels and man 🤧

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว +9

      We are all different, this falls on a spectrum.

    • @MrT8T3R
      @MrT8T3R 4 ปีที่แล้ว +2

      50 years old and I shave once a week. I can get away with every 2 weeks but by that time it looks like I have a dirty lip. I’ve had people ask me if I shave my arms... I do not.

  • @mar7dong
    @mar7dong 2 ปีที่แล้ว +1

    Xxy we are unique people.. i was taking t- injection every two weeks. I was diagnosed 10 yrs ago for this,
    Low on T, xXY.. i do have baby fats
    Especially on my tummy. Few beard. Nobody believes me im turning 48 yrs old this year. I was Born Differently in our Country only few Doctor knows this. I believe on my Age now, its so Embarrassing if i go to a Bar they always ask my i.d and said is this really you?! Come on get out in here… i try to smile and get going..
    Even in the Movies the cinema clerk always ask an i.d for watching a Rated R Movies. It sucks sometimes at work they Judge me how i look, and said im so very young to have a Manager position.. thats why i im having trouble apply for a job an interview. They Judge the way my Appearance. Not my Resume and my Experience for Work. I want to be a Normal Person..

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      Do you have diabetes???

    • @mar7dong
      @mar7dong ปีที่แล้ว

      @@neverstoplearning3451 not diabetic, unfortunately having a high blood pressure. Every time before breakfast take the BP 148 over 95 pulse 70 . No maintenance yet i just take 325mg. of Garlic Capsule & drink plenty of water 7 to 8 glasses a day. Cannot stand 4 to 5 hrs need to set down or else feels dizzy.

    • @neverstoplearning3451
      @neverstoplearning3451 ปีที่แล้ว

      @@mar7dong ok don't worry and I have suggestion for you that you can stop eating salt and all salty foods then your bp will control and I have read that men with XXY has high risk of diabetes so I asked because I am also XXY so I have tension about it and do you use insta

  • @seeyahsesman3409
    @seeyahsesman3409 4 ปีที่แล้ว +1

    Okay so Ryan i am a 16 year old teenager with wide hips and moobs , I Dont know if i have klinefelter or not , because when i was about 6 months old my mom claims i had wide hips , so my question is did you have wide hips when you were a baby

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว +1

      Check your balls and testosterone levels.

    • @kaliyuga3563
      @kaliyuga3563 3 ปีที่แล้ว

      @@LivingwithXXY The balls reveal the truth

    • @sirgalah561
      @sirgalah561 3 ปีที่แล้ว

      This will sound weird.. The size of the contents of your undies will give a good indication of having KS or not.. If your gentleman's luggage stayed the same size as it was when you were a child then it'd be a good bet you're 47XXY..

  • @hamdankhan9424
    @hamdankhan9424 11 หลายเดือนก่อน

    Tbh you are so handsome and you have killer height with massive perfect body you are attractive

  • @FOOTBALLHD9397
    @FOOTBALLHD9397 2 ปีที่แล้ว

    How to find you have 47 xxy

  • @briansung3036
    @briansung3036 2 ปีที่แล้ว

    True in a way but sometimes my wife saids that i might have ADHD too... so saying something slow and at times i get distracted pretty fast

  • @Julia-ey4zd
    @Julia-ey4zd 4 ปีที่แล้ว +1

    you seem like an enfj

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว

      Not sure what that means?

    • @onuohachukwu1938
      @onuohachukwu1938 4 ปีที่แล้ว +2

      Living with XXY www.16personalities.com/enfj-personality i think she means this

  • @sharethelove9316
    @sharethelove9316 4 ปีที่แล้ว +2

    Hi I am xxy and I don't take testosterone ..I refused it 10 years ago now I am 34 .and I would like.to.ckme back to testosterone.but on natural forms

    • @yungkiann4798
      @yungkiann4798 4 ปีที่แล้ว +1

      Vincent Pelletier Did your voice drop without testosterone? I think I have this syndrome but I don’t wanna sound like a kid forever

  • @thatoneaudience9122
    @thatoneaudience9122 2 ปีที่แล้ว

    OMG…I’m just realized that I have this syndrome…..

    • @LivingwithXXY
      @LivingwithXXY  2 ปีที่แล้ว

      You need a medical diagnosis. Karyotype test

  • @pierreguevarra6486
    @pierreguevarra6486 4 ปีที่แล้ว +1

    can a person with xxy syndrome become a doctor??

    • @robertomacias1228
      @robertomacias1228 4 ปีที่แล้ว +3

      Friend, if you can, I am in 3rd year of medicine with SK in my

    • @judithpedreira6609
      @judithpedreira6609 ปีที่แล้ว

      @@robertomacias1228 hello , quiero comunicarme contigo q hablas español, como puedo hacerlo??

  • @TheWolfgangfritz
    @TheWolfgangfritz 4 ปีที่แล้ว

    So I take it that you wouldn't find any Klinefelders at Harvard getting their PhD!

    • @LivingwithXXY
      @LivingwithXXY  4 ปีที่แล้ว +9

      I have friends who have XXY who have a PHD and are XXY.

    • @ashsmart6895
      @ashsmart6895 4 ปีที่แล้ว

      @@LivingwithXXY did they take testosterone?

    • @brajkishorjha2729
      @brajkishorjha2729 3 ปีที่แล้ว

      @@ashsmart6895 😂

    • @Red5dJedi0
      @Red5dJedi0 3 ปีที่แล้ว +3

      I'm XXY on my way to masters.

    • @sirgalah561
      @sirgalah561 3 ปีที่แล้ว +1

      Im doing history at university and have xxy.. It just means you have to apply yourself more..

  • @k.k6790
    @k.k6790 3 หลายเดือนก่อน

    Sounds like ADHD

  • @neverstoplearning3451
    @neverstoplearning3451 ปีที่แล้ว

    Do you have diabetes???

  • @paufloreas5618
    @paufloreas5618 4 ปีที่แล้ว +3

    So maybe gay tendency can be adjust by testosterone shots..... maybe it works