One Man’s Struggle with Klinefelter Syndrome

[@janhall5659]

My Grandson has just been diagnosed with xxy.He is still in the womb and there is so much more doctors can do now.He will be loved by all my family.He has a cousin that has down syndrome. We all love him.He is smart and funny.

[@brittneybarfield9781]

It does so much for my soul to see this man carry on conversation seemingly with ease. His personality is awesome. He has overcome so much im sure! It gives alot of hope for kids struggling with this condition. Thanks for sharing!!

[@LivingwithXXY]

Couldn't agree more!

[@Davett53]

I was diagnosed when I was about 13,....when I was going through puberty. I had begun to develop "breasts", and my parents had me get plastic surgery, which was great, because I then had a normal male body. I don't have wide hips. Our family trait is shortness. My Pop was only 5 foot 4 inches tall, and my parents joked that I was the lanky one, I topped out at 5 ft.- 6 inches. My mom and sister are both 4 ft. 10 inches. I had read that I may have gotten KS, because my Pop was 10 years older than my mother. There had been some correlation related to having an older father. Maybe that isn't true any more. Pop was 42 and Mom was 32, when I was born. I did have learning disabilities, and was tutored all through school until I went to high school. I kind of blossomed in high school, I became socially comfortable with my peers. My creative hobbies, became something bigger. I wasn't good at academics, but I loved being creative and began making art. Even before graduating high school, I was already competing to get my art into exhibitions. I continued making art and earned my BFA, in Print Making. While in undergraduate school, my creative art making was recognized, and I won a 3 year art scholarship. I went on to graduate school, in Fine Art, and did both Print Making, Sculpture and Furniture making, & I earned my MFA. I competed to get into exhibitions, I was in group shows and one (man) exhibits. So little was known about KS, at the time I was diagnosed, at age 13 in 1966....though I began getting a monthly injection of testosterone. Which may not have been enough. I suffered in college with anxiety, and depression, and began seeing a therapist. ( when I was about 20)

[@stopthephilosophicalzombie9017]

What an inspiring post. Congratulations dealing with your challenges and making the most of your talents.

[@Davett53]

@@stopthephilosophicalzombie9017 Thank you for your kind comments. I give credit to my mother, though my diagnosis didn't happen until I was 13. I was struggling in school, and she was a teacher, so she did everything to keep from falling behind in school. She had no idea there was a connection to my Kleinfelters. In fact she never knew, nor did I, until months ago. She died when I was 43, and I am 70 now. It was assumed I had a learning disability, with no cause. I was referred to as a "late bloomer". I needed glasses when I was in 5th grade, and for all I know my poor vision, may have been a factor as well.

[@SCCheaters]

@@Davett53A mother’s love… Always so inspiring! Best wishes and regards to her and you my friend!

[@Davett53]

@@SCCheaters Thanks! In 1966 there was no pre-testing for DNA abnormalities. My mom somehow knew I might be left behind if I wasn't tutored. In years before, kids were shipped off to mental asylums, just for being born deaf or blind. Mom's no longer with us,...she'd be more than 100 years old, if she were. I loved her dearly, she was my biggest supporter. She had wisdom and a great comedic mind. She could make up a story on the spot, it would be hilarious, and educational. She would do voices for all the characters in her story, too.

[@ninjamaster3453]

I'd like to hear more about Michael. He's a bright and inspiring person.

[@AsmarterWorld]

When I was a teen I starting having gynecomastia and that was my main point of concern and not feeling great about myself. The surgery I has to remove it was the best choice ever and I don’t regret it ❤

[@moonlightfitz]

Good for you! What about the hips?

[@Davett53]

When I was diagnosed with KS in 1966 at age 13, there wasn't much information about it. There may have been, but my doctor never directed me to anything to read about it. There was no Internet, only medical books in libraries. When I was 27 and had a steady girlfriend, (the Internet had yet to be invented) I looked up KS again in library books. There still wasn't anything much written about it. There were drawings of men with unusual bodies, and one passage I read that was depressing,.....saying KS men "tended to talk endlessly about nonsensical things". My girlfriend and I laughed about that one, because I did have a knack for talking about nonsensical things, and I was proud of it. It was the basis of my sense of humor. I loved making up stories and I was very talkative. I entertained my friends with my nonsensical stories and whimsical pondering. I still do.

[@moonlightfitz]

true 😂

[@mikeifyouplease]

Sounds like you would make a great author.

[@Davett53]

@@mikeifyouplease Thanks. The disheartening thing was having a much older sister who hated me, and took every opportunity to put me down and make me feel bad. She mocked my story telling, and later in high school, when my teachers were praising me & my creative writing,.....there was my sister, finding technical flaws, and spelling errors. I would send her letters, when she was away at college, and she would send them back, all marked up with red inked negative comments about my poor writing and spelling skills. I believed her, and assumed I was closer to being a moron, and that I would never amount to anything.

[@mikeifyouplease]

@@Davett53 I am very saddened to hear how you were treated by your much older sister. Sounds like she had issues herself. Hopefully, you have had and continue to have a happy and fulfilling life.

[@Davett53]

@@mikeifyouplease Thank you for you kind words & thoughts. Yes, Sis has issues. She was my folks first born child, and she was the "little queen" in the household,...then I was born 6 years later. (The blame should lie with my parents, for waiting so long to have me.) Not that, that is uncommon, but I think today's, parents try to have their kids, closer in age. So then I came along, and "being the boy",....meant I was treated like some special big deal. Sis got shoved aside, I guess. My folks always said she was "so independent" & smart. They didn't notice she felt pushed aside. So my sister blamed me, for her loss of standing. Older siblings are fairly often jealous of their younger siblings. Believing they got more goodies and attention. With a 6 year age gap, meant we were never in the same schools, at the same time. Maybe because of my Kleinfelters,..I was slow to develop. I took a long time to mature, I had learning disabilities,....that took a while to overcome. Our mom was a school teacher, and she made sure I was tutored. I was tutored from 2nd grade until I began high school. In all academics. By 5th grade, I became interested in art making and plastic model building. I excelled in those hobbies. In 6th grade I submitted a drawing in a local art competition, and I won it. My name was printed in our local paper, and I was awarded a blue ribbon. By time I was 12, I was winning awards in plastic model competitions. I customized car models, sculpting their bodies with a special putty. And the military models I built, I made them look realistic, by adding dirt to the paint, and poking hot pins into their bodies, to suggest they'd been riddled with bullets. As I got older I began taking art classes after school and on weekends. I began competing in local competitions. In college and grad. school I exclusively took art classes. I was exhibiting my art in local and regional shows. Winning awards and gaining recognition. I earned both a BFA & MFA, and won art scholarships, that paid for my schooling.

[@KRYPTOSPOLLARD]

I'm making an assumption here, but it's very well based in a lot of literature. When he said his physical attributes are the biggest thing, i think that there's a very very very fair chance that he's drastically underestimating the mental effects. The mental effects of low T are, much like many many other mental issues, so fucking hard to see while they're happening to you. I don't have XXY, but i have a pretty serious primary hypogonadism from an accident. My T was almost always

[@michaelhiggins9791]

I understand what you’re saying totally! There are definitely some mental challenges I’ve experienced but I’m also very hard headed and determined. I have not been on testosterone but continue to push and challenge myself. The plan is to get back on there soon but I’m happy you bring this up.

[@KRYPTOSPOLLARD]

@@michaelhiggins9791 why are you not on currently, and why were you on originally ?

[@KRYPTOSPOLLARD]

@@michaelhiggins9791 oh sorry, i misread that.

[@KRYPTOSPOLLARD]

@@michaelhiggins9791 but yeah, it's crazy how it improves your mental state of you've been low. If you're not low and you want to go above and beyond, that's cool if you know what the deal is. I just hate that so many dudes have perfectly fine levels and they feel like they need to run extra T, and they're not trying to be the next Ronnie Coleman, and they don't have the lifestyle and genetics to get anywhere close. Many people need better hormone levels, but to see these guys ruin their natural levels because they want to try and look like somebody else, but they just ain't gone do that or be that, it's honestly sad.

[@stopthephilosophicalzombie9017]

That's good to know. I've suspected that I have low T (i'm in my early 50's) and I need to do something about it.

[@codylaboy8992]

Thanks for posting guys!

[@LivingwithXXY]

Our pleasure!

[@RustyMartin-b9f]

🌞🌅Good morning XXY community..one life one chance..let's have a positive day.. against all odds..👑🙏❤️💯

[@chrsd2536]

Thank you for everything you do with your advocacy. You are so appreciated.

[@SayWhat-z4c]

Keep breaking stigma guys! I’m a woman & I am learning about this. You are people with a condition just living your lives. I like what Micheal said about getting past/ around challenges. Any human should be able to relate to that. Learning disabilities are mislabeled. It is not an inability to learn, it may mean working harder. Dyslexia doesn’t mean you can’t read, dyscalculia doesn’t mean you can’t do math. I’m studying medicine & we need to wash the stigma away from the science, because it’s gumming up the works.

[@LivingwithXXY]

Thank you!

[@NecroMoz]

What an absolutely lovely man.

[@store-i4p]

thanks for sharing this, this will help people understanding what people must be going through disabilities and not be a bully

[@matthewspratt8578]

Geetings from KCMO, fellow 47 XXY! It's cool to see more people be out there with their KS! :)

[@LivingwithXXY]

It’s the only way we change the misinformation!

[@sophieellen1254]

I hope Michael is well and I hope you are well.

[@j.b.4340]

Very brave. As an adult, my shoulders are permanently malformed from hunching, in an attempt to hide my gynomastia, which I developed during puberty. After I had “them” surgically removed, I couldn’t straighten my shoulders. They’re turned inward, or curved. I was judged, and messed with, regarding my abnormal appearance. It wasn’t a good time.

[@michigan1085]

I'm so sorry you went through that. Some people are just real jerks, especially in the teen years

[@stevencostin4401]

Hi my name is ,steve, I'm from England uk, I was 58 when doctors found that I had klinsfelter syndrome & Asperger syndrome, when I about 17 looking more like a young woman & I had breasts wide hips 4 boys held me I was sexual assault I'm now 76 years old I still can see them,not knowing about life, my life was my dogs, later I throught I met the women of my dreams but really it was a very bad nightmare, & so I told her about my life and who I was, 5 years later I'm homeless, ( I brought the house for my mum & step dad) when I told her about the boys she said I probably enjoyed it, my mum was raped by my real dad & later I was born yes I still struggle with my dreams, my luck changed for the better when I met a wonderful women who was a teacher, but now because of klinsfelter syndrome my body is falling apart I've lost count of the doctors & hospital treatment, being a pensioner not much money I'm glad for our NHS & of course it's all free my treatment is long term, anyway love to all xxy klinsfelter syndrome I only wish was it's a shame I was lot older

[@pibidemusrilanka6182]

Thanks a lot for the great service..

[@ohboy111]

I havent gone for treatment but i am sure i have this syndrome. Peiople of my age, my friends are normally living their life, study well, gain skiils, have money, have gfs, and there is me who dont have anything. What a joke of life!

[@PolarisFx]

I was over 6' when I was 12... you'd think that would be something people would view as a red flag, nope. You lucked out at 26, I found out last year at 39. We're like twins, except kleinfelters gave me insulin resistance and I became fat so my breasts blend in much better.

[@Sparrow1138]

Thank you so much for sharing

Somehow, because of the angle of the camera, the video didn't show perfectly how tall both of you are. People were walking in the background but it would have been a bit better to zoom out a bit, so viewers could have seen the difference more clearly.

[@M.-fy8gj]

Hi Michael I am from Kansas too I looked this up because I have a cat with this he is a very special cat thanks for sharing

[@stopthephilosophicalzombie9017]

What a nice guy. You both must be really tall because he didn't seem tall compared to you.

[@Mikeexteriorcleaning]

Hey Michael, i'm also Michael, i also have kfs. I didnt get diagnosis till i was 33. Also tall 6'4", but not you're tall. Same like you. Gym is so much harder. Also gynaecomastia is a bitch, so i use skins to hide it until i had surgery. I struggled with Maths, but excelled with patterns, and remembering things specifically. Ive learnt a few languages including Auslan. I definitely feel sometimes like I'm both sides of the equation (male&female) .

[@doctordos6390]

I know that i have that sickness without going to doctor because all symptoms (Except for No facial hair growth) because my body is slightly similar to him, and people mistaken me for a lesbian and they also make fun of me. I have trouble with social because of this. But praise God i learned to braced my condition

[@greggkimball4110]

On insurance tables, the average height of an adult American male is 5'9". By comparison, it would be helpful to know the average height of XXY adult males.

[@JorgeGarcia-ir3zx]

I didn’t find out until I was 43 when I was trying to make a family. I have lived a normal lifestyle. I was in shock when my urologist told me I was seen by two other doctors for the same answer I’m 50 now I raised 2 step children but it does seem to hurt mentally at times I would never have my own children. I’m very healthy thank God. And very positive.

[@LivingwithXXY]

Thanks for sharing! Maybe you would want to do a podcast?

[@gratefulot360]

When I was a teen I was told by my grandma that I should wear a bra. That hurt. I did get a double mastectomy in my fifties.

[@LivingwithXXY]

People can be so cruel. How are you doing now?

[@hamdan1003]

@@LivingwithXXY sir i have a question but I don’t have anyone to ask I don’t know anyone with KS pleased reply if u could tell me or if u have instagram

[@Joe-nw7wh]

I found out when I was 15 I've hated myself ever since @ 19 I had breast reduction surgery best thing I ever did

[@YASH_Luffy]

@@Joe-nw7wh Bro what was your breast size then i am 15 too but a liitle more fat in breast do i have klinefaliter?

[@viktorluvbikskog9389]

I have Klinefelters. Definetely one of the issues I have is lesser testosterone. Have to get injected testosterone or it drops to dangerous levels while estrogen is at a normal level for males. It causes a lot of body/mental issues due to the constant hormonal change. Hoping when I get to the right dosage in HRT, I won’t have to worry about those sudden shifts and changes because of low T. KS has forced me to work on myself from all angles as it was more aggressive in my teen years and puberty with low t. And I’m coming to find out some ks patients are more at risk of developing certain kinds of cancers later on. But, there is also a big array of what that extra X chromosome does to the human body; even when the appearance is altered a little or majorly, the bodies function can also be completely out of whack too. I call myself an enigma sometimes.

[@jancyfer8]

Is there any natural supplement to increase klinfelter syndrome person?

[@Kansas_Clairvoyant-Medium777]

His body shape and boobs are the same as I have. Only thing is, I have always struggled horribly with learning and anxiety and depression and I am pansexual. I feel disgusting in my body but yet comfortable at the same time, which makes it completely double standard.

[@WalldoTheWInner]

Hang in there buddy.

[@goo5976]

When I was super thin I was happy about how I looked but as I gained weight my gyno got crazy and my fat around my hips got crazy too. I’m not sure if this is me but I hope I can find out some day

[@MHDIQBAL-g3i]

Bisakah anda juga datang ke Indonesia Saya penderita penyakit ini dari Indonesia juga mau bagi pengalaman

[@JR-lb4ng]

I just happened to see a video about this and the cry caught my attention. I was diagnosed when I was I believe 13 or 14. The doctor didn’t give it a name except to say that I had an extra chromosome and they did a blood test which revealed that I had a low sperm count and would unlikely be able to father children. Now after reading about what this 47,xxy is, it all makes sense. Gives me an answer to so many questions about why I have a small penis, small testicles and man boobs. Why I am under developed in muscles compared to my friends. Also makes sense as to why I have depression/anxiety and Diabetes 2. Wished I’d have known this earlier in life, might have been able to cope better but I’m 58 now and I doubt a testosterone shot would do me much good now.

[@LivingwithXXY]

You dont know till you go check you T levels and talk with your doctor about getting on it. Its never too late to help yourself!

[@moonlightfitz]

the doctor didn’t said anything about testosterone injections?

[@Joe-nw7wh]

​@@moonlightfitztime 4 a new dr.

[@bouffant-girl]

I have this same syndrome diagnosis and I a. Undergoing treatment for this

[@tumblewede333]

Did he do Teatosterone treatment once diagnosed?

[@LivingwithXXY]

He did for a little while and then had to go off of it for a very long time. He hopes to get back on it soon

[@lakeview8157]

Its not good to be on Testosterone treatments for long periods of time. The worst part of it, is the itchy skin and you don't sweat while on it.😳

[@stevencorrea8032]

​@@lakeview8157I didn't know that I've been off for years and have no problem

[@moonlightfitz]

@@lakeview8157 how are you doing without t?

[@sharonstevenson199]

Ditto l had the same experience

[@RustyMartin-b9f]

Mind..body soul..360 health..💯❤️

[@Von199X]

Man I don't know if I have it I'm taller than average and store fat on my hips and thighs slight gyno but not noticable

[@LikeFaaT]

I am xxy in Hong Kong

[@krustysurfer]

Anyone done research on Atrazine exposure link with this gene expression?

[@stevencorrea8032]

Yes that is BPA Dr Tyrone Hayes does the atrazine

[@krustysurfer]

@@stevencorrea8032 I will have to look that up

[@tdq1628]

I have prolonged stress, mentally damaged / can't be confident, my hands and feet are long, my family has a body that is not considered tall (1.64), I am tall (1.78), Penis length 14cm when erect, no breasts, I am 18 years old, Can I be diagnosed with Klinefelter?

[@c87kim]

Damn they both 7 feet tall then?

[@LivingwithXXY]

No, I am 6’4” in Michael is 6’8”

[@LikeFaaT]

@@LivingwithXXYI am 188cm

[@reme001]

Breast reduction is easily done.

[@michaelhiggins2135]

There are actually multiple steps to the process of having them removed. I appreciate your concern but I’m ok! I promise!

[@Joe-nw7wh]

Breast reduction has saved my life

[@WestMoney-uz6qz]

I would be in heaven if my family could afford plastic surgery

[@OP-rooster]

All my life I have to wear shorts my waist size is 50

[@allisonlew4508]

WHY hasn't he gotten the gynomastia fixed by plastic surgery? It would help so much! And until then, wear a binder across his chest.

[@LivingwithXXY]

That requires money, and not everyone has the money to spend on that.

[@allisonlew4508]

​@@LivingwithXXY A chest binder isn't expensive. And I wonder if insurance or non-profit assistance could help with the operation and it's costs.

[@michaelhiggins2135]

@@allisonlew4508I appreciate your concern but I’m good. I’ll address it when the time is right.

[@mikeifyouplease]

The issue with binders is that they compress the chest, which in turn compresses the lungs and the ability for them to fully inflate. That can result in all sorts of medical issues from low blood oxygen saturation to increased fungal infections in the lungs. When I cracked two ribs, the doctors told me that they NO longer used binders, because of all the side effects that they caused.

[@allisonlew4508]

He's wrong - the easily-fixable man boobs are a problem for him being set apart.

[@michaelhiggins2135]

That is your opinion. Please remember to be empathetic when commenting on people’s videos about their stories/experiences. So many negative comments are unnecessary. I’m living my best life. You should too!

[@Inflec]

I think Michael is adorable. His voice reminds me of Paul Lynde. Besides, what's wrong with man boobs? C'mon, celebrate diversity!

[@mikeifyouplease]

@@michaelhiggins2135 Michael, you come across as a really nice guy, so I don't think anyone is criticizing you. They are simply offering suggestions to (in their minds) help you have an even happier life. Btw, gynecomastia surgery is the number one or two male surgery in many parts of the world. If you do ever choose to have the procedure, please research surgeons online. Some of them perform near perfect surgeries, while others...not so much. So if you don't want the procedure, fine. But if you ever do...just know that millions of men have gotten it already, and in some clinics, it has become a normal, routine (almost) boring procedure, performed nearly every day.