This Is Me With Klinefelter Syndrome
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- เผยแพร่เมื่อ 9 พ.ย. 2024
- Living with XXY became a NonProfit 501(c)(3) Charitable organization on November 6th, 2019. We have a new Website. Come follow the journey. livingwithxxy.org
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@LivingwithXXY
You look normal.
I am normal. What does normal even mean? Are you thinking that because I have a genetic condition ill look like some kind of freak? Just curious.
@@LivingwithXXY generally person with klinefelter syndrome have boobs like structure on chest
@@LivingwithXXY normal means, most of the people. the stock very much natural way.
@@AlvyK01 This is not true, this is only what the internet tells you to see.
@@LivingwithXXY I think what he meant is that You look as a regular male, not like a intersexual male, cause syndromes related to sexual chromosomes are a kind of intersexuality condition.
You don't look with female features or characteristics that would make think to someone that watch you that You are intersexual (part male and part female).
You look like an authentic male.
I’m 38 from Michigan, I found out I had klinefelters at 8yrs old they told me back then you probably won’t ever accomplish anything. Crazy! I use androgel it’s expensive for sure. I’ve taken testosterone my whole life. They (drs) told me I’d probably not even pass high school back then (80’s). I graduated from a college prep school and now I do laser surgeries across the USA. Never let anyone tell you you can’t do something because of any conditions you may have. Fight to get what you want in life..
I couldnt keep up with the gel I use nebido injections mad respect for keeping up with that
The able bodied frequently underestimate us. People with XXY or Kleinfelter’s Syndrome can do normal things.
I found this desgrace whit 32 22 years after puberty
@DlRlS você tem muita sorte de ter essa doença e ser bonito a maioria é feio desformico com ancas enormes
Good for you!!! Success is a helluva revenge.
Late last year, I lost a grandson at 20 weeks gestation because of the genetic testing results my son and his wife received. Their son was going to have Kleinfelter’s Syndrome. The mother opted for a midterm abortion. And I am still grieving the loss of this precious life that I couldn’t save. Thank you for validating my beliefs, that this child should have had the chance to have a life. That he wouldn’t have been be a lifelong “burden” to his older brother. You’re to be commended for sharing your life story with others, and I thank you.
This is exactly what I’m working on to try to change. Termination for XXY shouldn’t even be recommended. We live happy and healthy lives. Breaks my heart to hear this, thank you for sharing.
jesus. that's awful. usually i'm in favor of terminating pregnancies for health reasons, but that's completely tragic. he could have lived normally. i'm sorry for your loss.
I am sad to hear of your loss.. it is wonderful that this man was willing to open up and attempt to educate people. So sad that the Doctors did not more fully educate your son and his wife in regards to this genetic issue. Blessings
@@leo1933 i'm sorry. you deserved better than that. i'm glad you're here today, though-- even if we're small parts of the world around us, it wouldn't be the same without common folk like you and i around
Just stumbled on this page and this community. I’m 38 and found out when I was 36. Twice divorced and a recovering alcoholic with anxiety and depression. I had a hell of a time learning in school but I somehow not only graduated college but got a masters too. Even with all that I struggle with imposters syndrome and the feelings of inadequacy and being empty or less than whole among my fellows. Still, I manage to maintain a good job, good health, and strive for a good quality of life every day. Thanks for the doing this, it’s incredibly helpful to see that others are in the same fight. Keep it up! I know I am trying to everyday.
I am a mother of 3 and I've commented a couple times before. My third child was my first son. The son I always wanted, who is xxy. He has just turned one, and dare I say just as handsome as you. Healthy as can be at this age as well. We are so proud to have a son so special and so healthy. God bless this channel, because most information online outside of it, is generalized, vague, and honestly not very informative. Thank you again, from a young mother, and God bless.
Thank you. Make sure you check out our website and podcast series.
You are super handsome, don’t let uneducated people put you down, I would have never guessed you are XXY you look more masculine that a lot of folks I know
I have XXY chromosomes as well. I'm 24, and I look and sound extremely feminine. My parents were going to put me on testosterone when I was a teenager, but I didn't feel comfortable going on it and luckily I prefer looking feminine. I don't consider myself transgender though, I'm just a male who looks and sounds completely female. Most people call me she though, lol, which is fine. I don't care if someone calls me he or she
If you dont mind me asking...what's is your sexual preference ?
What is your sexuality
Is this you who in that photo?
Used to get that as a boy and it really bothered me when with my father as he was a male chauvanist. By my teens I embraced anarchy, proto goth culture, the arts and paganism and have never been happier. I have had kids, so I guess the KS is mild. Im a pacifist, learning when I was young was a problem due to hearing a deficiency that was never catered for in school, it was eighties London after all. I have never been very muscular, hairy or matho thank fk. At the age of 54, weight around the midriff is a slight problem of sorts possibly because I can't exercise due to liver related problems and a lack of enthusiasm. So I have reawakened the goth as my kids are now adults and have a long black mohican. I sometimes wear big fk off army boots with a long pencil skirt, or biker leathers and mohsir jumpers, it all depends on how I feel. I guess I am trying to say that I have learned to embrace the burning inside and am relatively at peace with myself. Once the chronic depression, weight and liver problem has totally improved, I will be fine. Be yourselves and ignore the criticisms of others who are usually insecure themselves. Dark light love to all.
You are gender apatethic
I’m a medical student just learning about syndromes and treatments and genetics in general and I think is pretty great to see this type of videos to really learn more about the people going through them. I believe there is so much information out there, but people focus less in actually seeing patients with syndromes and realizing that people can have normal lives. Anyways, I wanted to thank you for sharing your experience and help decreasing the misconceptions about KS out there. My best regards from Mexico :))
Thank you for taking the time to do some research outside of the textbooks and classrooms! We love the support we get from all over the world!
So u may help these people with experiments ur help is appreciated
X2 I’m from México, and i’m a medical student too, in spanish, there's even less information, and that's ‘cause your video is so important for my presentation at the U
@@galileanigenda6391 true
I'm a highschool student. Came here for the same reason you did.
I am a medical student and I assure you I will never have a negative perception about klinefelter in the future after watching the video.The point i like the most is 'its on a spectrum'. Great. Kudos for a cheerful life dear.
Nice comment, Rajat
You needed this video to not have a negative view on people? Pretty lame
I have it. I had a hard time to accept myself when I was a teenager. I was different. But then I decided to overcome how I look naked and accepted myself. After that, since I was 17 y
o., I had a lot of girlfriends, all were ok with my gynecomastia. I am in my second marriage now. It's all with your attitude toward our syndrome. Just be sure in yourself, have self esteem, be curageous, embrace your life with postive thoughts, be happy.
I know NOTHING about this medical condition, at all. But what I DO know is that it is wonderful that there are videos and sites like this that are available today, to help people understand and deal with Klinefelter Syndrome. I can't help but also believe that you are improving people's lives, and are increasing the medical profession's knowledge to help people today and for generations yet to come. Carry on! You're a beacon of love, care, and encouragement!
My son who's still in utero was just diagnosed with XXY and I'm so glad I found this video, it made me feel so much better. Thank you for talking about this.
www.livingwithxxy.org
Thank you for sharing.
We just got the same call from our doctor. We are 14 weeks pregnant with our son.
My son has this syndrome , hé is 10 months ! He is just perfect normal !
Thank you Ryan for your AWESOME video and for educating the public about Klinefelters Syndrome! I am so proud of you! ⭐️ My amazing XXY son just turned 18 years old and I can't wait to share this video with him along with the 2 resources you mentioned in your comments above of www.livingwithxxy.org
and discord.com/channels/597210138813661197/598992851040206869
For Ivory and Siobhan, the Moms- to- be, congratulations. I just want to share that my son was diagnosed prenatally via amnio testing. Sadly, the ignorant geneticist during the beginning of our pregnancy recommended termination. Luckily we went for a 2nd opinion and realized that Klinefelters Syndrome is manageable and it is not the gloom and doom outlined by the 1st terrible geneticist. With the prenatal diagnosis we were able to get Early Intervention at 10 months of age to help with the low muscle tone. He started school with an IEP and then changed to a 504 Plan. Knowledge is power and knowing the KS diagnosis ahead of time is a blessing since you can read up on KS and be the best advocate for your child. We are blessed to have our wonderful son!
KS is the most common chromosome disorder in males and occurs in 1 in 500 males but only 10% of cases are indentified in childhood. Best of luck and congratulations with your Xtra special baby!💖
I just got the call today. I am 11 weeks pregnant, and my doctor told me that we will talk about termination at my appointment with the geneticist. Holy crap that was hard to hear.
I am incredibly grateful to have found this video, because Google is a nightmare.
I am now 67. My mom was a school teacher also a registered nurse. She stopped nursing when I and my sisters started elementary school, and became a teacher. She tried everything she could to help me not knowing I was XXY. All through elementary, middle and high school I struggled. On my high school graduation document was written "Not recommended for college". I was diagnosed at the Mayo Clinic in Rochester, MN in 1987 during a physical prior to hip surgery. When I hit 30 I was laid off. My company provided education funds. I used it to go to college. From the junior college entrance exam, they required remedial courses of math and English - along with a "How to Study" course. The How To Study course was freaking amazing! Had I this course in high school, I would have shined. Knowing I had great difficulty with Math, I saved those classes form last. When I started my first math class I was at a 4.0 GPA. While in college during a biology course, I was the only male in this class. The rest were female nursing students. I sat in the front row. In one class my teacher described what an XXY male was like. "They have pear shaped bodies, have female breasts and are mentally retarded". Wow! On the day of my final exam, I waited until all students walked out, and when I handed my test to the teacher, I said "do you remember when you described XXY males to our class? I want you to know not all XXY males have pear shaped bodies with female breasts and are mentally retarded". I told her that I am XXY!" She was shocked! I graduated with a 3.5 GPA with honors. I retired from IBM in 2016.
Very sweet story . You had a wonderful mother
You made it through, you are unstoppable
Hey Ryan .. you're an incredibly handsome man inside and out. Every man is susceptible to the same 'symptoms' as we age. Why do people feel the need to judge? 'Normal' is a spectrum, and also a myth. Enjoy life and celebrate who you are!
Yes. Im a medical student and my books tell me differently about people with klinefelter. I really had imagined a different image.
Imagine what older generation doctors without internet had to work with.
Thank you for doing this and hope the medicos would gey updated too.
Same, I'm a medical student studying this for an exam next week. Its always helpful to find real people with the syndrome or diagnosis online and what they have to say about it.
Same! Med school too! Very interesting video thank you ❤️
How do you know genetic test ? Or evident at birth .
I would never in a million years tell that there is anything different about you (I really don’t want to say ‘wrong’ since I don’t think that there Is anything wrong with you). I do think that education is the key to everything so what you are doing is awesome!
My late partner and best friend had Klinefelter Syndrome. He identified as a gay man, and was diagnosed in his early teens. With testosterone replacement, he, like you, to all outside appearances was a normal, handsome man. Excuse me if I'm being too graphic, but except for small testes and some dyslexia (which may or may not have had anything to do with having an extra X chromosome) there was nothing particularly unusual about him. Then again, he was exceptionally lanky with large hands, and was a notable and fun risk taker (among other things, he loved hang gliding and sky diving), which were all qualities that were different from his parents and siblings and may have been associated with Klinefelters. Thanks for posting your video.
I was just diagnosed 40 mins ago I’m 36 years old and it’s so nice to be able to finally understand all the difficulties I had as a child and things I still struggle with as an adult. It’s awesome that are creating content like this , I myself wouldn’t have the confidence to do it . So kudos to you brother. I’m looking forward to more content. Keep up the good work.
Im glad that you found out and are processing it. I found out at the worst time or I think it was the worst time at 17 it wrecked me for years and instead of me conquering it. It or my mentality beat me down for years. This is not a end all its just a condition. An tomorrow is another day
I researched chromosomal anomalies in college. I think you are a beautiful human being. I feel so fortunate that I educated myself. Because what you are saying is so right. More should be done for those with chromosome variations in the realm of normalization and acceptance. I love that you are educating the masses. It is more normal than one might think. Even for those with extra “Y” chromosomes.
I hope you feel special and blessed and not made to feel otherwise by ignorant people.
Just know you are loved by so many of us.
I hate when others say you look normal. I say you are normal. Everyone should see it that way. ❤❤❤
Thank you so much for this comment! It is the most understudied and underfunded!
I know this video is 5 years old, and others have already said the same thing... but when I look at you all I see is a normal, healthy, beautiful man.
Thank you. I still look about the same, Ill do an update video soon.
I was diagnosed with KS in 1995 at the age of 30. I knew I was different yet I couldn't put s finger on it until I met with an endocrinologist interviewed me at great length. Fortunately I was four years sober and clean at time and escaping through chemicals was no longer an option. Twenty six years later I'm still here embarking on a fitness journey that is opening doors for me. I believe in FEAR. Face Everything And Recover. Happily married to a wife who loves me unconditionally keeps my determination strong. 3 years a pescatarian and I'm feeling amazing.
Thank you for sharing. Shoot me an email. Livingwithxxy@livingwithxxy.org
I was diagnosed with klimefelters syndrom when I was born. They told me when I was 9 about what it is.im 18 years old now I started taking testosterone shots every month and for the rest of my life. I have so much trouble with highschool and the stress catches up to you. I thought I was the only one with this condition and I get emotional about it. But hearing other people in these comments makes me feel better about it. If I can loose 126 lbs I know I'm capable of doing anything. Thank you for everything.
Great video, Ryan! My brother has Klinefelter syndrome and I just love your positivity in this video and being comfortable in your skin. You are awesome! Thank you.
Awesome! Thank you!
Hey I'm in med school rn, soon to be a doctor (in a year). I really appreciate that you made this video to educate people, and destigmatize Klinefelter's. I was shocked to know that there are doctors out there who promote misinformation about the syndrome.
Yep thats why we have started this channel to help change the missinformation.
Congratulations from India ♥️♥️
You look great bro! Healthier and more masculine than the majority of American men. I'm always happy to see people demolish the stigmas that are thrust upon them.
I appreciate that
I was a doctor for 35 years. I have not seeen your condition even once, like most doctors. I have seen two Turner women, who also had a good life. I thank you for what you do. I am a pro choicer but I am 100% against abortion because of any kind of pränatal diagnostics. A child is not something you order at amazon and give it back if it is faulty. Unfortunately not enough doctors really know the condition. You are a brave young man.
You probably saw it, you just didn't recognise it.
So, you're against murdering the unborn because of prenatal conditions, but you're totally okay with murdering them because they're inconvenient...?
Ooooook.
@@timber72 Nah, he likely only agrees in cases of life of mother- but no other reason, even detection of birth defects through ‘prenatal diagnosis’ become the future parent’s responsibility for getting pregnant. Not sure what is pro-choice about that.
Yeah, I don't understand that either. How are you against abortion but pro- choice? If that's the case, I'm pro choice too.... Except the choice was made when you opened your legs. However, even in case of rape or incest, it's still not the child's fault and murder is never a solution.
I hope, as a physician that gave an oath to protect life and heal, that you look to the Creator who made us all and the Universe for your hope and faith. We are made in His image and should never let our fears or selfish desires for a potentially better future steer us to think that it is OK to exterminate another living human being -- whether prenatal, at birth, or after birth. Love and peace to you.
I am the automatic abortion of kids that are different, but can have a quality of life like for example people with Klinefelter or Turner Syndrome or people who have mongolism. They can live very happy lives. Its a difference if you force a woman to take to term a kid with an Anencephalus or diseases where you know the kids will die almost 100% or have a very bad quality of life. But to abort every child with a birth defect feels for me very consumerist. Apart from this I think it is good like it is organized hete in Germany. A woman can do an abortion without problems until the 12 th week, whether with an abortion pill or with suction. The only thing is she ne3ds to talk to an organization like pro familia and they have to give her a stamp that she was educated about the procedure as well as the alternatives. Until you are 21 its payed for by the insurance. Later in life you have to oay between 300 and 500 Euro depending on the clinic. Abortion after rape is allways paud for by insurance
i am a medical students and i was like studying about klinefelter and for me there is no shame to have it you are a men like all the man out there so keep fighting the hate of the hater all love from algeria
You look terrific, a very masculine guy in good shape. People need to be educated about XXY and know that you and others are capable of being more than three letters of the alphabet. Be yourself! Glad you have this TH-cam channel.
Wow, thank you
Great video!. My husband has KS he's thoughtful, kind, artistic, clever, a quick learner, great in social surroundings, fantastic photography, maintained a career all his life, he can put his hands at anything, great car and bike fanatic, not much into physical exercise other than mountain biking, not into sports other than motor racing, he's great with children, funny, forgiving, patient, sometimes emotional outbursts but over as quick as it comes, always remembers birthdays/anniversary, can chat for England yet has his time of reservedness. We give each space, which is a good thing.He would have been a great father but that is KS's downfall (infertility) he's a great uncle to his nieces, a great dad to my son, our son now, and a great grandad to his grandson. I wouldn't change him for the world, I love him, flaws and all, for he loves me flaws and all. Nobody in life is perfect, there is no perfection in life, whether a male has xxy xx or xy. Dealing with and understanding KS is important. However it should not be a hindrances in ones life, you can be anything you want to be in life, the power of the mind is a powerful component that were gifted with, having good support, emotional understanding and most of love and acceptance life can be very rewarding.
So he’s really your wife
@@gregrussell2530 was that a dig Greg? Shame on you. He’s a very good husband sweetie. We all should be in touch with our masculine and feminine sides. Have a blessed day! 🙏🏽
@@predator82dpilot56 you just got to stay on track with your emotions, but do not let it consume you. No we don’t have children together we met late in life.
On the whole David is a very positive individual which is admirable in this society. Have a blessed day appreciate everyday! Give thanks 🙏🏽
@@gregrussell2530 did you actually listen and watch the video Greg? Would you say he sound or looks like a woman! You need to enlighten yourself and not make judgments.
@@gregrussell2530 dude shut up like tf??
I'm currently an A-level student, and in biology, we learned about this genetic disorder(I thought it was nearly impossible at first), thankful for this channel on giving me the opportunity to see what someone who is living with this disorder is like... God bless your heart brother🙏🙏
Ryan, I am so damn proud of you. To fight misconceptions is a virtue of character and courage. And your body looks like an average, healthy guy's physique! God forbid we should all look like gym bunnies. I hate that expectation anyway. I love you and have total respect for you. Keep going--don't stop.
Thank you so much!!!
You look great man! Live your life with no care of others negative opinions.
Thank you Jake. Ive always lived my life the way I want to live it, and so I created a nonprofit to give the voiceless a voice and its working. :)
Hi from UK! I've just found out my 3 year old son has an extra X chromosome during some blood tests to determine the cause of his developmental delays. Its a relief to find this channel and I look forward to learning all I can
Endocrinologist's are rude and degrading in treating xxy. Diagnosed at the age of 15. Was told I'd probably live a gay life,no children. Was not started on hormone replacement. Was denied testosterone my entire adult life. Dr's told me I did not deserve to be on testosterone. My level was 7. Women have higher testosterone then I had. Finally found a G.P. That started me on testosterone injections. Hugh change in overall attitude and felt much better overall now at the age of 65. I still managed to have a successful career,physically worked out my entire life, stayed inshape to have a masculine looking body that normal men are born with,most of them not all with normal chromosome. The medical community still esp Endocrinologist's should not be treating xxy men
Trans girl here…. Your body is perfect and very male coded :) Awesome to see you so comfortable and vulnerable.
I lived with a guy with this, he was undiagnosed at 24 years old. He was functional but did have issues with anxiety, emotions etc, he got into horses with me and I think that helped. His body shape was very similar to yours. I once told him to talk to his GP as I felt there was something with him not quite right, and he was told to go away and stop making things up, basically 😢. We parted ways, but remained friends, amd he was eventually diagnosed, about 15 years after I told him to seek help. He’s been on testosterone ever since. This was years back, he’s almost 70 now.
Thank you for sharing!
who doesnt have traumas anxieties etc in life
I'm a medical student in America learning about chromosomal variations and researching Klinefelter Syndrome. Thank you for educating and sharing your story with us!!
Nothing wrong with you dude. Actually you’re in better shape than most men we see on the streets. I admire your courage to expose your self and helping others.
Thank you, and nothing is wrong with me :)
My husband has the same as you! It’s so beautiful to see this together! Keep going!! Greets from the netherlands
Thank you! I’ll be in Europe in September hopefully
B Bonza sry for asking tis ,whether u have child??
@@vinithvinuh7877 it's impossible for them to have children
Do you have kids ?
Can klinfilter men get married
You're a beautiful man. Thank you for spreading awareness of this condition.
I appreciate that
Man, you’re beautiful. So incredibly handsome! Spreading your message is so important, and you’re doing a fantastic job!
Thank you so much Dave. Positive comments are nice to come by on here.
I don't see anything unusual about you physically. You are really handsome, and fit looking, and you sound well educated and articulate. Big thumbs up from Ireland 😊
Thank you! 😃
Wow. Good on you to put yourself out there! Klinefelter’s Syndrome boys, men and their parents need a role model like you.
Thank you!
I am 34 weeks pregnant and they believe my son may have this so you give me hope thank you
Crystal Johnston God bless you and your son!
Crystal Johnston someone close to me has it and he has lived a “normal “ life and has sustained a job is married. Positive vibes your way
Awesome! Keep thinking positive thoughts.
I used to teach a boy with Klinefelters, he was always 'normal' IMO, and was told that he would be sterile. Klinefelters is more common than people think, I commend you for sharing your story ❤️
Great point!
My oldest son has this. HE is 6'8", married 19 years and works in aviation. WE had no idea he had this until he was checked for
sperm count as they could not get pragnant, only then did we know. My other son is fine and they have 2 children. I never heard of this before
and appreciate this mans video, Other than the zero sperm count, he has bad joint pain....
I am 26 years old, 6’10” 216 pounds and was diagnosed with XXY when I was 14 years old. Thanks for letting me know I’m not alone.
Of course there are 1000s of us out there. @livingwithxxy
I have a 42 year old niece with Turners Syndrome. My sister was smart enough to ignore the negative things that may happen to her and see how she developed. Each patient is an individual and she is a functioning adult with two college degrees. She exercises and very carefully watches her weight.
Women with turner are short statured and have high iq
This is great. My brother passed in 2015 at 24yrs due to a heart condition we knew nothing about. He looked like the typical description of klinefelter syndrome. You look completely different, but probably because you were able to keep up with the hormone therapy as my mother couldn't afford it for my brother after he turned 18. There was so little information about this 4 years ago. Doctors are still clueless at times when they discover my brother had this.
Wait is this life threatening?
Wait I also have a weak heart can you explain about the symptoms more please????
You are what everyone with chromosome things should aspire to become. Perfect the way you are, but more importantly, who you are, your character and be a blessing to the world. Thank you sir
Wow, thank you
My son has Klinefelters and he is now 22 years old. I found out from having an amino while pregnant. Initially, we were devastated because we didn't know how he would be affected. We started going to Children's Hospital in Denver where they have a program for this and feel we are coming out on the other side. I have encouraged my son to start his own channel also to give people hope in the beginning years when things can be so overwhelming. Society has no clue about this diagnosis, so I feel blessed we are in Denver and can get the resources we need. Thank you for sharing. I subbed.
My story is much different from yours. I self-diagnosed at 22, my doctor said I had nothing wrong with me, but I insisted and got the genetic test done. I'd seen the image with the arrows that you mentioned, and it was like looking at myself in the mirror.
My body is noticeably different from yours. To me you don't have gynacomastia :D ahahah. I'd lived years of my life without any testosterone replacement therapy, and my concentration and energy levels were dramatically affected. When I woke up in the morning, I had brain fog and couldn't think or study, so I had to run for 30 minutes as soon as I woke up. Then I would get hungry, so I would eat lunch but my metabolism was affected by my syndrome, so I would need to sleep for 2 hours straight after the meal.
Before 22 I'd never had any facial hair. I'm now 32, and I have hair everywhere now, I sleep less, and I continue to run daily in the morning despite not having the severe brain fog I used to have (but I still don't wake up perfectly not even now).
Despite the therapy, I still look like an adult in a teenager's body. I'm 1metre70 height and 55kg, almost underweight. I eat about 2,000-2,500 calories per day, only healthy, every day of my life. I don't eat unhealthily because I still get belly fat like you do, just I remain thin and frail looking everywhere else. Like a matchstick person with a beer barrel attached to the mid-section. I don't have stomach fat anymore though, now I'm just thin. Some people say I look invisible, others say I look ill, others say I should buy clothes from the kid's department. "Anorexic?" "Do you eat? ""You should put on weight". "Do you eat?" even coming from an endocrinologist, not knowing that my condition will give you little muscle mass.
Ah also looking for clothes in general is almost impossible. I've even considered tailors. Most clothes are too big (even small size), and when they are the right size they put on show the gynacomastia. I tried wearing a really tight gynacomastia vest and I couldn't believe how good it was at hiding the breasts; two hours later I was short of breath...just walking was uncomfortable...I took off the vest and during the following days I couldn't take full breaths. I never wore one of those things again.
I don't ever go to swimming pools or beaches. I don't even know how to swim. Ah and in general I haven't ever been on holiday as an adult. I get scared when applying for jobs in case there's a uniform that will show my chest.
I was thinking to start weight lifting but I only have a small goal for now...5 kg in a year...it's so small that it should be do-able. But for now, considering all of the gyms are closed due to quarantine and virus etc. it's so hard to find weights ahahaha everyone is cleaning out the stock seeing they can't go to the gym.
Despite taking testosterone, I don't really have any interest in sex, I'm a virgin at 32, but this might not be anything to do with my syndrome...I think I might be sapio-sexual, demi-sexual or something else that's highly specific.
Basically, COMPLICATED LIFE. Ah plus I've always suffered from periodic depression, actually going through it now...but I don't know how much this is linked to my syndrome. In any case, I've always been a down kind of person. The dark thoughts aren't necessarily linked to having male-breast tissue and other syndrome-related symptoms....I just tend towards being down in general...with or without taking testosterone.
Before anyone advises me to get the male-breast operation removal surgery, it's damn expensive. I've asked for it many times and I don't qualify for it under public health system, because the size isn't large enough (you have to be like a D size cup) or you have to have painful lactating breasts. If you don't meeet this criteria, then you need to go private, and it's about 5,000 pounds (UK) and I needed to save money to move out (and now I'm in about 2,000 pounds debt right now as well, so it's not really an option for several years at least).
Ah yes as a child and teenager people would even mistake me for a girl!
The more I'm writing the more I'm remembering...
Well I think you were really lucky if you started your therapy from a very young age...perhaps a lot of this you didn't have to go through...
Hugs my friend. All the way from India. ❤
I just want to say that I admire your courage! You must be really strong! But I think you should go check a psychiatrist about your depression it can be cured and you'll feel much better.
Sending love from Algeria.
Gynocomestia surgery in India is cheap
I have a friend who is XXY. He used to have feminine features in his body and face and his voice was high pitched. But now he is taking testosterone therapy and have removed the extra fat in his breasts in Iran. It's cheap in some countries. Try searching for the cost of treatment in Iran or India I'm sure you'll find it maybe at less than 1000 GBP.
This is making me thin I should get tested
I am a normal XY male, but I always enjoy your videos. They are very informative. I had read about Klinefelter Syndrome in college course but your videos show the personal aspect of it. Keep up the good work. You should feel proud of your accomplishments.
Thank you so much. I really appreciate this
Fantastic video to raise awareness. What internet and doctors says about this syndrom is not the whole truth. My husband was diagnosed when we had been a couple for a few years. He was looking totally normal (except not much facial hair) and veery handsome and still is. Studied at university for five years and has a great job and great social skills. Klinefelter is not a reason for abortion if you find out that the baby has it ❤️
I wouldn't have the slightest inkling that you had a genetic condition that differentiates you from XY males. You sir, look totally fabulous and I wish you the very best in life!
We are hiding in plain sight.
My best friend in highschool had Klinefelter Syndyome or something very similar indeed. He was in university when he was diagnosed with a homone imbalance. He is about 6'5". One thing that stands out in your commentary as well as the Mayo Clinic website is thst the syndrome varies from one person to the next. I can understand that easily as i have Marfan Syndrome. 85% of Marfan people have serious or deadly cardiac and/or vascular involvement. 85% have serious ocular involvement. I am very lucky in that I fall into the 15% of 15% who has neither. In my case the major symptoms have been with ligaments. 14 surgeries and 62 years later i am not done with them yet.
Keep in being your own delightful self. You are a handsome man who has a brain and a warm heart.
Thank you for sharing!
Many neurotypicals in various cases see any difference as something to get rid of. As though it was evil and to be avoided. Be it Klinefelter, Autism, Downs Syndrome, etc... They see the individuals born differently as burdens to society. When we are not in most cases. I was born with HFA - High Functioning Autism. And my own family sees me as a burden. Which is why I decades ago cut them out of my life.
Stay strong.
My daughter is high functioning Asperger's syndrome. She is my daughter and I love her dearly. She is grown now, living in a neighboring state on her own, and we talk almost every day. This neurotypical person gets it!
Hat off to you good sir. You are one handsome, kind, and awe-inspiring gentleman! Keep going!
Thank you kindly!
I live with this and my biggest problem is my breasts area, I do not have the courage to be without a shirt and I sound like a female at times I don't have an adam's apple, etc and the list goes on, but I feel I am living my best life, as I am made unique in my own individual way, and it's great to know I am not alone. People ask me why I sound like a girl when I sing, you can listen to some of my songs here on TH-cam and see for yourself, but this is just who I am!. But Ryan you are amazing thanks for the vid it means a lot!
I just listened to two of your songs. I think your voice is beautiful.
I don't think you sound like a female, and there are many other men whose voices are on higher end.
I always sounded like a much younger person, and most of my life I also looked younger than my age.
when I was in my 30s there were times when I'd answer the phone and I get someone immediately tell me 'I want to speak with your mom'. (and yes it's kind of irritating)
I wish you the best,
with lots of love.
Hi, you don't sound like a girl... I mean, girls have different vocal ranges, like boys also do. For instance, I can't reach the high-pitch notes you can reach. You have a tenor voice (or maybe even a countertenor which is very rare) and you should be proud of it! And I must say I find it very distasteful and rude that some people have asked you why you sound "like a girl"... First because there is nothing wrong if someone sounds "like a girl". Second, for me it gives me the impression that people want to discredit you (as a man). You should ignore these kind of comments.
You're so brave speaking about it. Well done!!! We need more education and awareness!!
Goodness, this is heartbreaking. I'm sorry you've had so many negative experiences with medical professionals. The first time I learned about the Klinefelter syndrome was a couple of decades ago, when I was working towards my degree in psychology. More recently I got a qualification in genetics, and the Klinefelter syndrome came up during that course as well. I swear to goodness, I've never heard a negative word about people with this syndrome. Quite the opposite, I've been taught that XXY people are so normal and live such normal lives that most don't learn of their different genetic makeup until later in life (twenties or thirties).
I'm shocked to hear that wanted babies are terminated just because they are XXY 😢 This is heartbreaking.
Wishing you all happiness and contentment. Please do what you can to disregard the opinions of ignorant people, they are irrelevant.
Thank you so much for your videos. I am a woman, 27 and just two years ago I got to know I am 47 XXY. I don't have testicles, but I have non functional ovaries, healthy uterus, and generally I look feminine, doctors have no idea what to do, if I can get cancer on my ovaries - because they think it is similar to Swyers syndrome, but at the same time it's not similar at all. They even put me on a pill, which was a complete disaster, I gained a lot of weight, and my skin was even worse, I am not gonna start about my confidence and self esteem..Everytime I get new and weird information, basically I don't know how my body works, my hormones, my skin, I have no idea why it is sometimes so easy to lose weight and then it is so difficult, I don't know who I am basically and it is really hard and also, you find out what is real friendship and how people judge...I can't have babies, so when you get to know about this, it is painful, I am not gonna lie, but I know I am not alone and I realize I am lucky that I am healthy and I can do whatever I want every day. The scary part is nobody knows what can happen in the future. I am from middle Europe and I am kind of hopeless where to find answers or some solution. Thank you for your brave personality and I wish you the best of luck!
Bambooocha007 i thought xxy can just happen to men’s
God will help you
Only men can get xxy
If you have a Y chromosome anywhere you're a male, regardless of how many X's you have.
xxy is just for guys
Thankyou for your channel, i have klinefelter syndrome found out last yr when i was 14, my mother sent me this to show me your channel because she loved it because they make kilnefelter look bad on google compared to what its actually like so thankyou
Thank you for watching and commenting David!
This has helped me so much! My daughter is pregnant and had genetic testing had she is having a baby with XXY. You look fabulous and thank you so much for your video!
Glad it was helpful!
You’re a ROCKSTAR!!! I applaud your honesty, transparency, and courage. #beyou
Thank you!
Amazing job you're doing. Wish I had seen this video when I was diagnosed. But then you might not have been born yet. Got diagnosed in 1996 when I was 32 years old. Older sister was a Pediatrician, Mom was a Nurse and they never suspected any genetic mutation in me. Luckily I was married 4 years when I got diagnosed. Got super depressed cause I felt so sorry for my wife that due to "false advertising" that she was cheated out of getting her biological kid. Told her I wouldn't blame her if she wanted to divorce me and find a more suitable mate. My mind played the shame card on me, saying you're not good enough for your wife. She was stoic and said she doesn't consider my diagnosis as a handicap and she said I am normal in her eyes. Bless her heart. She has stood by me through thick and thin. After the shock wore off, our MIL told us of an Adoption agency called Holt International and we were able to adopt our Korean daughter who btw looks very similar to my wife. I was not as smart as my older sister and my younger brother who are both physicians but I was able to finish Dental school.
I always knew something was different while growing up since I didn't really go through "real" puberty during my teenage years. I did go through delayed puberty at age 32 though. Started on some testosterone patches and then later Injections. During high school and college years, I would work out with my brother and friends but would never achieve any muscle tone but they would get bigger and more fit. Was very discouraging. Got a physical before college and the doctor wrote "abnormal" for my testes on the form but since I'm Asian, my Mom that was normal and never got genetic testing done.
Seeing your channel will help me share my life experiences and in turn help with other people who have same doubts and depression. Keep up the good work
Good luck with ur life man🌱
Wish all luck for u and ur family
Thank you for the support
I'm doing an academic research and read about the syndrome in articles brings me a negative vision, a cold perspective.. and watching your video now has clear my mind and i feel gratitude to know more about it. thanks
Thanks for sharing!
Thank you so much for making this video.
My wife and I just learned that our unborn child might have this condition and I was quite worried at first. Until I saw this video.
You're tall, handsome and articulate, but most of all positive.
I'm having my first child at the age of 44 and all I want is a healthy baby, and your video has allowed my wife and I to breathe a sigh of relief after watching this video.
So once again THANK YOU. THANK YOU. THANK YOU..
You are a smoking good looking guy!! God bless your mom for keeping you. No doubt your mom is one very happy mother. Thank you for your videos.
I think you look great and I’m so glad you are speaking up to help educate everybody! Thank you
Thank you so much!
I am a 19-year-old genetics student, and as I was studying, I came upon this syndrome in my textbook (I had heard about it before), and I looked it up and came across your video. I am female-to-male transgender, but it might have to do with my chromosomes, so I am currently waiting to do caryotype analysis. As someone who also has a complex relationship with my sex chromosomes, I'm really glad I found your channel. People need more awareness. Keep up the good work!!
Thank you for the support!
My unborn son may have this. This video has given me so much hope. I've been so scared for my baby boy. 🩵
Don’t be you can give him testosterone hormones when he grows up so yeah, he will grow a beard and he will have a deep voice. I mean, you’ll just give him testosterone hormones and that will just balance out his hormones.
You’re a young, handsome, well spoken, intelligent man. Don’t let anyone dull your shine. 😘😘😘😘😘😘😘😘Sending you love & kisses.
Thank you
From the Philippines here, 🇵🇭 wont ever forget about tis XXY, a topic we discussed in dental school (yes we also study the whole body and diseases/disorders)
It's quite shocking to hear that even doctors were ignorant of this disorder at some point. Glad you stayed strong through the difficulties. Lookin' awesome, man!
Hi! I'm studying about this in psychology and your videos have helped me understand this topic better. Thanks for teaching me and the public. I'll continue to watch. From UK
My boyfriend has this and we have a baby boy together. He has delays, but he's a blessing. As we all are blessings
hi I want to ask how could you have a baby and ur boyfriend has this syndrome .did have him without any treatment bcuz I lost my hope me and my husband we have 4 years marriage and he has the same syndrome the doctor said that we have no hope to have a child plz answer me
ryhab hamouda there is medication you can take to increase the sperm count.
I just want to say THANK YOU SO MUCH FOR THIS VIDEO, you have put my mind at ease, and I can sleep better tonight, I am pregnant and just found out yesterday my baby is XXY and was terrified, and you are right, the internet is scary, and there are doctors offering abortion in a instant, and that terrified me more. I’m so happy I found this channel and subscribed. THANK YOU for bringing positivity and a different view of KS, I love your confidence, you are AWESOME.
nico ortiz God Bless your baby! Congratulations. Don't worry trust GOD.
I just found out too. This video made me feel a lot better
Same.. found out two days ago, and just today the tears and fears arrived. This is our second pregnancy and I'm in deep uncertainties about the future I could provide, but this channel and website is a huge silver line in cloudy skied.
You have a great deal of courage. I'm sure you hear that a lot but I do feel like you are courageous. I wish you nothing but peace, joy and acceptance.
You look and sound like a lovely loving young man. I hope you and your friend Luke, and dog, Rocco are flourishing.
Yes we are, thank you.
@@LivingwithXXY Wonderful.:)
WOW...I have only in the past few days come across this and started looking into this syndrome and the other related chromosomal permutations. I'm 46 now.
I'm 99% convinced this is the answer I have been looking for since the age of 15 or so. The checklist of matching issues is scary: wonky teeth, tooth cavities (but had a lot of work done to keep both in check all my life) - very lean, but relatively a lot abdominal fat - wide hips - generally weak upper body development compared to lower body - arms and legs long relative to the torso - very delayed puberty - low testosterone - no gyno, but fairly large nipples for a man - very little body and facial hair (but I'll comment further on that...) - prone to anxiety, depression - mild ADHD. And some typical things that more match other chromosomal "deviations, such as some curved fingers and flat feet (which I had corrected as a child).
This (mainly the late puberty) has ruined large parts of my life and were a huge factor in me seeking refuge in drug use for a decade.
In my early 20s I did correct some of the physical developmental issue due to delayed and incomplete puberty by sourcing and using some testosterone and anabolic steroids. Unfortunately, by then it was too late to correct the flimsy bone structure in my hands and forearms. It still corrected muscle development, voice and beard growth.
Recently I have started TRT, fed up with the constant low mood and energy. I feel good. And I'm even droppong the belly fat now.
Fortunately, 1 thing I have been blessed with is intelligence and l have no earning disability, other than some mild ADHD which I have learned to live with. I have managed to build out a pretty decent career. I have also kept very fit over the past 15 years. So that + the TRT now actually puts me ahead of many of my contemporaries fitness-wise. The typical poor upper body development actually gives me a great genetic-freak advatage in cycling. Silver lining....
Well done for speaking out, you will be helping so many people, parents who are worried looking for information, young boys and men who are dealing with a diagnosis and are afraid right now and needing accurate info too ,My youngest son is 17 and has Downs syndrome we are in the uk, he didn't get a diagnosis till 20 months old,( he just wasn't the typical look etc) so we were in complete shock, We went for help because he'd just started falling behind reaching milestones that toddlers begin to do, and he was having issues walking. We had some awful outdated into told to us and given to us by medical professionals the same outdated info that causes many parents to run in fear to the abortion clinic. He's a happy healthy young man now, he went to mainstream school, his speech is affected but his abilities are many, yes he has Downs syndrome, yes it affects his life in some ways, but the biggest problem isn't the Syndrome its the ignorance of other people. He doesn't suffer with DS the ONLY suffering he does and he's had has come from societies idea of what is good and bad normal or abnormal ,My son doesn't steal , murder, take drugs,beat people up etc etc. He's living his best life. Again well done for speaking out!
Thank you for this!
Ryan, you look great! Thank you for making this video.. My son has KS, he is beautiful, special and I love him just the way he is.
Thank you so much!
My wife has Tuners Syndrome (XO) chromosome. She says a lot of the things you say (stigmas, too much misinformation on the internet, etc) which I 100% agree with. Her parents’ dr recommended abortion back in Brazil where she was born and her parents refused. She’s had to overcome a lot of things, but she is beautiful, healthy and smart now at 35 years old. She just finished school to be a nurse practitioner. I enjoyed your video. The reason I found you was because I am studying this in my biology class and I decided to research for myself.
Thank you! Maybe you can show this video to your class and teacher.
Thank you for putting out all this info man as a health care worker this is eye opening. Wish you the best of luck mate and keep posting more so people can get a better idea of Klinefelter Syndrome.
Thank you!!!
Thanks for sharing your story with the world. You certainly look like a normal human being to me 🙏🏻🙏🏻
Wow, thank you
Thank you for starting this channel. Just came across it today. I’m 33 years old and found out I have Klinefelter Syndrome 10 years ago now. I’ve had more questions answered from watching your videos than any doctor has been able to give me. I appreciate you, brother.
You are so welcome!
You are gorgeous. My 11 yr old was diagnosed while I was pregnant. People are so ignorant to this syndrome and its sad, but he has a great pediatrician. Thank you, and you are awesome
Keep fighting man, you’re a big inspiration for all of us❤️.
Thank you for the support.
You are amazing! I was told I could not have children over 12 years ago! Two days before my 43rd birthday I found out I was pregnant! I did the genetics testing because of my age it was recommended. When I was told I am having a boy with xxy I was so worried! I felt it was my fault for being pregnant over 40 but this is my one chance to be a mom! I truly feel this is my miracle baby. The doctors told me abortion was an option and told me all these things the child will suffer from. Now I was also told the genetics testing are not 100% so I thought I would research and learn about klinefilter syndrome! My husband and I are going to test baby's blood to get a more accurate answer and then we will learn and be open with our guy so he can also learn! We will do the hormonal therapy if necessary!
Again we are not 100% sure if our baby has xxy yet but the genetics testing while I am pregnant said there was a high risk of my child having it. I do feel that it dose not seem as bad as the doctors make it sound and or as bad as what I read, so thank you for your videos! You truly are making a difference in this world!
By the way you are very handsome! 😁
Keep spreading the positively of living with xxy!
Your boy will be amazing!
My son was diagnosed with autism at 2 because he couldn’t speak, he had low muscle tone, and muscular weakness. He has struggled to do things other boys can do and now at 4 1/2 years old, he did genetic blood work and found out he has Klinefelter syndrome. Now doctors don’t know if he has both XXY and autism or just XXY. Thank you for posting your content, it is a lot more comforting than reading all of the bad things on google. I hope my son has a long, healthy and happy life. Your content shows me it is possible
I have autism / aspergers (diagnosed with both at different times in my life, probably less severe than your child because I have always been verbal) and it was quite noticeable when I was young, I've turned out pretty well though and "normal" (Neurotypical) presenting as a young adult at 26 now. It was pretty tough growing up but c'est la vie, it is for everyone. Best wishes to you and yours, having a supporting family and friends will help significantly and certainly helped me!
@@AlexA-qx9pn thank you for sharing! I appreciate it 🙂 Glad you turned out well, and I hope the same will happen for my son. We will definitely continue to support him!
You re amazing. Thank you for making these vids and being vocal about this syndrome. People need to learn more about it. Thank you for taking upon yourself this monumental task.
P.S. you re so handsome
Thank you for the support. We are now a nonprofit and you can check out our new website. www.livingwithxxy.org
You look like a regular guy to me. And who cares if you naturally rock the dad bod? Looks to be like the only misery that comes from your condition is the expectation to conform to stereotypes. Something that you folk with Klinefelter syndrome are definitely not alone on. Keep smiling bud, you're an inspiration.
Thank you for making this channel i just found out that my son has this. Im about 13 weeks pregnant and had nipt testing done which came back he has this. I couldn't even talk to the doctor all he said was the baby had an extra x chromosome. I didn't even know what that meant and i broke down but all he said was he will have learning issues. He didn't even say the gender until i Googled it as soon as we hung up and seen its only in males. Once you google it your gonna lose it and just start crying you don't wanna find out your son will have alot of hardship in his life. But seeing these videos has helped me calm down alot. Im glad to of found this out now so we have a plan for his future and know ahead of time. Does anyone know any channels on which they have this and are kids. I was thinking of starting a channel when he is born and show other parents what it is like as a baby. To show what happens as they grow and what we are doing. Thank you so much for posting these videos.
You’re a great mother❤️
Respect for you! ❤️
Thanks for this honest and open video. The dog just shows that we all deserve love and can be loved!
You are so kind
Dude you look like a normal guy to me. And even is you didn’t your soul shines and is one of the most beautiful I’ve ever seen.
You look great to me
Thanks! XXY is 1-500 yet only 25% get diagnosed and over 70% are terminated in utero in the USA.
Very sad the babies are terminated for this xxysymdrome. There are other issues children are born with that bring a baby into the world,that may live 60-70 years and never be able to take care of themselves even not be potty trained or able to dress or eat by themselves. My friend has a 40 year old son with brain damage,he has been living in a care home since he was 20 & to heavy for her to get into his wheelchair. I don’t understand abortion of a baby that can grow into a productive person.
I don’t see anything unusual about you. You look perfectly fine.
wow.. u even look more masculine than majority of men!! bless u xx
Wow, thank you
You look fine. Stop worrying about your body. You don't have breasts. Get any counseling you need and be strong. Be happy.
Australian here. I'm wondering what is wrong with geneticists and doctors in the US if they discriminate against people with chromosomal differences. I expect this is not really the case. The group that does discriminate though are Conservatives - especially religious conservatives. I am an aging medical student and its great to hear your story and learn from it. Bravo mate! And thanks. You have a lovely place to live and a beautiful dog :-)
Our church denomination is splitting over admitting people with different sex and gender identities from "traditional". To me it's about lacking the ability to love and care for the folks that Jesus broke bread with - the marginalized, poor and outcasts. Yet the traditional church values make people outcasts. Thank you for clearing the air and having a place to refer people to learn what they don't know.
Not "differences" It is a genetic abnormality, however mild
@@Eohippus100 I was reading a story about the Covenant Christian church massacre by a former female student who came back as a transgender man. One possible solution is Swyers Syndrome.. The body looks female but has xy chromosomes, no ovaries or testis. At puberty apparently the streak gonad makes the body more masculine. That's not transgender on purpose. I'm trying to understand how to reason with the traditionalists that we can't use sex and gender as a basis for excluding people from inclusion and leadership roles in the church. We are supposed to tell 'them' they are sinning.
@@Eohippus100 But there are differences! Because even people who have down syndrome also have an extra chromosome, but even tho it's different from someone who is intersex, or born with sewer or turner syndrome etc. Like it or not, there are chromosomal differences in all these individuals.
Thank you for letting us know...And It needs a great courage to come out in public and express one's disorder. You are a warrior bro.