“I Was Born With An Extra Chromosome” | Listen Up | ABC Science
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- เผยแพร่เมื่อ 30 ก.ย. 2024
- At the age of 31, Seamus was given a diagnosis that changed his life - for the better. Subscribe to ABC Science TH-cam 👉 ab.co/2YFO4Go
Klinefelter Syndrome (also known as 47,XXY) is a common genetic condition, affecting one in 550 men. Despite the prevalence, it’s rarely diagnosed.
Small testicles are often a sign, but other symptoms can include reduced muscle mass, reduced body and facial hair, enlarged breasts, low sex drive and low energy. Speak to your GP with any concerns.
Thank you to @LivingWithXXY for introducing us to Seamus: / livingwithxxy
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👏 👏 BIG THANKS to Seamus for sharing his story.
Read more about 47,XXY (also known as Klinefelter Syndrome) here 👉 ab.co/2VVnJZ8
💖
Thank you for Seamus's story, Some would try to suggest there are more than two sexes and use someone like Seamus as a case to "prove this point". Thank goodness he has the courage to speak so clearly about his condition, Hopefully it educates the illusional.
I too was born with a intersex condition. It has been difficult living with this. In all I’ve had seven or more surgeries and stage three testicular ovarian cancer.
Today i am having a mammogram as I also carry the gene for breast and ovarian cancer.
Sometime in the next years ill need another surgery. That will be number 28
Thanks for sharing your story. People need to know we are apart of the world.
@@markrussell3428I know science is hard for you, but try actually reading more about intersex conditions. You are literally denying the existence of something well established and something you literally just watched.
@@Fizzypopization Thanks. Honestly, this isnt hard for me to understand at all and I have read lots. If there is something specific, you disagree with please let me know. What I would say is intersex is a large category that captures a grouping of genetic anomalies and other abnormalities related to sex identification and functioning. The different abnormalities occur frequently enough to become identified and grouped in the larger Intersex category. At its core, these are genetic or related malformations that take the form of anomalies just like there are other anomalies or “birth defects” such as: down syndrome, cystic fibrosis or hypospadias. If someone comes from the Fausto-Sterling school of thought or believes sex is assigned at birth I can see where the confusion comes from. Sex forms in utero as a fetus develops, takes shape. Sex can be determined as early as six weeks with some degree of accuracy and normally is 100% accurate through amniocentesis later - well before birth. When its not clear in utero there is a risk for an anomaly.
This man is so brave for going on camera and sharing his struggle. He’s owned it and is actually helping others
Exactly, what a man !
Especially brave doing it as a man. I feel in our society it's so much easier for women to speak up about issues and the issues men have of any sorts get silenced the one way or another. Awesome guy!
@@maddinek women feel a stigma too talking about infertility, but men feel emasculated to discuss any sort of issue like that 😕 especially regarding low T, Erectile D, or hormone issues
@@Forge17 men getting laughed about, called names and considered less of a men if they talk about emotions. The classic response is something like "mimini such a poor guy" and tons of other things. Therefore I'm not surprised we aren't talking open about them.
@@EG-misanthropeHonesty often takes bravery, yes.
I’m so happy to see more people disclose this type of sensitive information to the public. I am intersex who has male appendage, but ovaries and uterus. Find out around 20 years of age after periodically having what I thought was a uti or prostate cancer, but found out it was a period.
Wow, what a story you have. I'm curious to know more. Can I ask how you were helped with having periods? How do you identify? I'm genuinely asking.
@@Andrew_Warden Hey! I’ll be happy to answer your questions. My doctors have been amazingly supportive and quite knowledgeable of my condition. I’ve gone through two stages of puberty with my condition being the second. Shortly after my diagnosis, I began taking testosterone. Originally my body was producing a decent level of testosterone and around 18 years of age, it plummeted and I started having mood swings, lower back and stomach aches, occasional diarrhea with leg pain. I begin spotting thinking it was an uncontrollable uti and it would last for a few days and then I would notice changes in color of blood around the time it would stop. I don’t want to give too much details as I don’t want to gross out anyone. I was given midol to control the pain, or would drink black coffee which helped for a while, but had to go to stronger meds due to the pain. I also take sanitary napkins with me around the time I feel like it’s about to start. After starting “T” my menstrual cycle has changed tremendously. It went from every month to now once every four or five months. If I were to stop taking “T”, I could still develop breast tissue, widened hip, and a host of other symptoms, but T has been working well for me. I still identify as male.
Birth control probably took care of the periods.
Oh How scary it must have been to think you have cancer :( but thank you so much for sharing, you are absolutely helping others who may have your symptoms and dont dare go to the doctor's to get help! I hope you are doing much better now knowing what it is. Again, thank you for sharing ❤ (English isn't my first language, hope I didn't write anything wierd haha😅)
I wonder if there's an environmental cause that we don't know yet.
My stepson was diagnosed with this disorder. It was actually a relief to know that his behavior and physical symptoms had an explanation. He had all of the typical Klinefelter characteristics, and life was not easy for him. Unfortunately, one of the risk factors of this syndrome is testicular cancer, which took his life at the age of 35. He is much missed.
Rip ❤
I can relate. My stepbrother James didn't have Klinefelter Syndrome, but he developed testicular cancer that spread to his manhood, kidneys and lungs. He passed away in 2018 aged 48. Sorry for your loss 😪😪
@DotMcFarlane I understand. I am so sorry for your loss.
Thank you for telling this story. Prayers to you and your family.
Sorry for your loss . 🕉️🙏
My fiance has 47 XXY and I never had a problem with him. When you're with someone, you have to be there and support them. Not judge them. Sadly, my fiance passed from cancer 12 years ago. We have been together for 14 years He was an amazing person and always tells me, how happy he was to have met me and I made him feel confident everyday.
Rest in peace mate. I wish you good luck honey he's waiting on the other end I'm sure you'll meet him one day
May he rest in peace.. What type of cancer did he have?
14 years as a fiancé?
@@dionne0120 it says "we have been together for 14 years" so probably not fiance for the entire 14 years :)
Are you married now
I got diagnosed with 47xxy last year. This man's story resonates with me so much. ❤
You’re a truly they/them person. 🙂
That’s awesome! Knowledge is power! There’s a lot more men with it they just don’t know it yet.
I'm glad Seamus is getting the treatment he needs. I have Turner Syndrome, which is 45 X, so I'm a woman who lacks the second X (or Y). I also was helped with hormone supplementation, so I can relate. Good Luck Seamus!
p.s. I'm older, and It is really liberating that topics like this are openly talked about now. I was even told as a child not to talk or be open about having Turner syndrome.
Not possible. If you had only 1 X you would be a clone of your mother.
@@Connection-Lost what about the 22 somatic chromosomes she got from her father?
@@Connection-Lostit is true I have it too
@@LiberperloI have it also it is nice he is talking about it
I had a friend in the military who was also XXY. He didn't find out until he was 40. He had amazing extra mental abilities that very few people have.
What were those extra abilities, if you don't mind me asking?
@@tigergreg8he could fly
That has nothing to do XXY, but with the rest of the genes
@@FTKSoky Lmao
@@tigergreg8 EXTRA ABILITIES
He learned enough of a language in a week or so that he said was getting a good grip on understanding it.
He could see auras and know things about people. He could tell what part of a person's body was ill. In the Air Force the doctors used him in their hospital office to tell them where the person needed help. This helped the doctors to diagnose people correctly and save lives. This was very real. He was dependable. There are probably people alive today because of his abilities.
The Air Force doctors studied him. They found that one part of his brain was more developed. He himself attributed this to having an extra chromosome. I don't know if that explains his gifts, but it made him feel more positive about having an extra chromosome.
His physical appearance was typical of XXY, but that's not so different from many other men, so as much as he was studied, the doctors did not think to see if he was XXY. He learned it later after the service.
His differences caused him some difficulties in life. But I don't know what they are. He was a cool guy and had good friends. He was very close to God. Something about his character made being close to God natural for him.
The human race has achieved things that other animals have not. Part of that is due to the tremendous diversity of traits among people that it takes to create a civilization. Everyone should be honored and valued. That is how Native American's feel about everyone. Our differences are gifts. Everyone was valued for their differences.
My father had a saying that guided his life:
"EVERYONE IS A DISTINCT INDIVIDUAL". There is something unique about everyone that we should not try to change nor fix. Honor people for how they are. We need the variety.
I enjoyed this topic. There is a world of people who are unique in some way. "One shoe does not fit all".
I wish everyone happiness!
Very brave of him to share his story! And it is shocking to read that 1 out of every 550 men has this condition. That is so many!
1% of the population has some kind of hormonal or chromosomal problem that affects their fertility. That's 1 out of 100. Some women have only 1 X chromosome, instead of 2, for example. Kleinfelder's syndrome is just one example of these problems.
He's a good-looking guy!
@@jonathanwetherell3609 wow awesome! You(r son) may have been the reason why the doctor could diagnosed those other cases! That's great
He is brave and Jesus loves you!!!
@@בתושלישוhow do you know what someone who supposedly lived 2,000 years ago thought or felt. You shouldn’t believe the stories anonymous men from a different country who spoke a different language wrote. If you had a clue about the origins of your religion you wouldn’t take these writings by ignorant people so seriously.
His mom building him up and advocating for his autonomy feels do heart-felt. Telling him he doesn't have to be stuck in a rut, that's a life changing thing from a parent
I was born with XXY. A little different from this gentleman. Learning difficulties and anger problems when I was a child. Still have some of those problems at 40 years old.
I wish you well. Hope you will avail yourself of any help you may feel you want or need. Live your best life !
Wow you pretty much just described me, I'm going to look into this.
Not sure it's related to the extra chromosome. Have you been tested for other things like adhd or dyslexia?
@gothicyid I am not sure. But that is what my doctor said at the time.
Do you just get angry for something you don’t even know why ?
Being this gutsy and open about your life is incredibly brave. What an extraordinary man. I wish him every success and happiness.
well now you know that it is possible to be born with three chromosomes so people saying that you cannot have three yes you can and it happens
@@raven4k998It's a genetic abnormality. There's still only 2 genders
Brave for being authentic and just existing? Your bigotry is astounding.
Agreed!
Low testosterone but a killer beard
No, normal testosterone due to injections. Therefore normal beard.
@@WaterTimeLapse how much mg testosterone did you take and what is the interval.
Yup with injection
@@WaterTimeLapsenot all men with normal t can even grow a beard at all, so not normal
@@7531monkeynah men with normal testosterone will grow a beard. If they don't then they have low T
This is why you can't just reduce gender to chromosomes!!!
It's an anomaly, and people with Klinefelter syndrome are biologically male
I mean, you literally can and he just proved it
There are four aspects to consider: sex chromosome, sex physiology, personal gender identity, societal gender identity. These are all different but related.
So you yes absolutely you cannot reduce gender to a chromosome. Nor can you reduce sex to a chromosome. How your sex chromosomes get expressed development can be quite different to what you expect from the chromosomes. Gender identity is a psychological construct that is largely based on your physiology too.
In essence, sex and gender are extremely complex with many factors affecting who someone is.
I was diagnosed with XXY at 34, feeling tired and experiencing symptoms like low testosterone (1.1), gynecomastia, low energy, and reduced sex drive. Androgen therapy has significantly improved my condition. I also have ADHD. I am grateful to have two kids through a sperm donor, and I proudly call them my own.
Thank you, Seamus, for telling your story. I am glad that you found answers. I think that many people in the world need to hear stories like this so they can understand that not everyone is exactly the same, but that is OK.
Good on you for sharing your story about your extra chromosome, I am sure that lots of people will hear you're story and understand more about themselves and get the help they need
I have Kline Felters syndrome also, life has been hard too but I manage. Thanks for your storie Seamus.
*Klinefelter Syndrome
@@freyjasvansdottir9904shutup
I can totally relate to this, I have a pituitary tumor that took away all my testosterone. My bloodwork said I was at 23, when the normal range is 300-1200. It is mentally and physically punishing, and more or less ruined my relationship. Glad this guy found relief and peace
I hope you've found relief and peace too 🙏
@@Anonymousey44 I so agree. Kevin, I hope u get solutions to any areas you feel your need/want. You deserve it friend !
You can get testosterone replaced prescription from your doctor.
g'day Kevin my oldest brother had a pituitary tumor removed when he was 42 (29 years ago), after 10 years the doctors in Melbourne Australia had a party because he was the 1st patient in the southern hemisphere to live 10 years after that surgery, here it is now 29 years later and he's still alive. he's a stubborn bugger lol, never say die.
i had the opposite problem, i had too much testorsterone and began transition to female in 2003.
I hope you have found relief and peace, too. Everyone deserves happiness.
There's nothing WRONG with him.... intersex and genetic variances are normal. NORMAL. Stop being weird.
This is very brave, I have Swyer's Syndrome, I'm female, but I'm 46 XY, found it out when I was 24, had a surgery to remove the pseudo ovaries and been on hormonal replacement therapy since then, I'm 35 now and it is hell with the high BP, the weight problems, and all that... But here we are!
Great insight; I’m a biology teacher: great to share with my students when looking at chromosomal difference and how it’s ok to be different 💕
as a biologist why don't you tell the truth...infertility, learning disabilities, genetic defects, and more serious health issues. And why don't you tell them how this comes about...the unnatural selection...are you courageous enough to tell the truth? I doubt it.
@@bmr4566 wait are you saying, I need truth it sets us free from so much 😂 I am being serious im very interested
@@bmr4566 -- "..learning disabilities, genetic defects, and more serious health issues.."
@@bmr4566 Is having XXY unnatural ? Because nature is the reason people are born with XXY lol
@@orenz.272 The same nature responsible for genetic abnormalities, like being born with a missing/extra limb?
It takes a lot to admit let alone share his story. You are much braver than I lot of so-called macho men or alpha men out there. Bravo.
Really !! Have s great day ahead n
!
Approx 1:600 of males have the xxy or xyy variant. That's a lot of men. Roughly 6,500,000 and at least a couple of million are unaware of it.
Thanks to people like Seamus, that know there is interventions that help, and are willing to talk about this as if it's just like any other health condition, which should be the case.
Irrespective of the size of one's testicals, talking about it on youtube takes balls the size of grapefruits.
For XYY and XXX, like 95% of them are unaware of it.
When I found out (1984) about my XXY, it was 1:1000. No one knew how to treat it. In 2001, I was introduced to AndroGel which made me feel like I went through puberty again. I have used it daily. I’m in my early 80’s.
About a decade ago, I was member of three XXY groups online (XXYTalk which later was sold to a group on UK; KS group in California, and a group organized by owners of DELL Corp). No one cared about adults knowing they are XXY. Interest and research was on toddlers and young children, questions like how did they get it and how to treat. Discussion among members reached the point of discussing matters outside KS so I left.
There’s no such thing as male. Please stop normalizing this hate speech.
Well said!
One of the things that resonated with me was how you feel after a diagnosis. At 58, I was diagnosed with a condition that I'd always had. I felt empowered, validated, and grateful because I finally had a label that explained why I was different. It was life changing.
I am glad that people are brave enough to go public like this. When a person is diagnosed with any lifelong condition, it makes it so much easier when you realise that you are not alone.
meanwhile some geniuses think xy always means man and xx always means woman when human sex is so much more complicated than that. glad to hear more stories from intersex people!
yeah, 1 in 4-6 people are like this, i don't understand some people for saying silly things like that 🤦🏾
Yeah this is an anormal condition 😬
This is less than 1% chance to have any of those lol.
Exceptions do not nullify the general rule
@zeged 1% diagnosed and shared in records 🤡 literally the guay just said he only knew until 30's imaging how many people never knew or is scared to share it, problaby is closer to 10%
In 1965 when I was diagnosed with having Klinefelter syndrome, very little was known about it or was written about it. I began getting testosterone injections, but even then, they were monthly, which later proved to be inadequate. But they worked enough, so that I developed body and facial hair and have a deep manly voice. I didn't really know my learning disabilities were also a by product, until I saw this video. I struggled in school, but since my mother was a educator, she made sure I was tutored. I hated that I went to "school" even during my summer's off from regular school. She recognized my skills and talents in being creative, so she made sure I could take all the art classes available, beyond what we had in our public schools. In high school I was already beginning to exhibit my art, and win awards and recognition. In college I won a 3 year arts scholarship, based on my creative body of work in Print Making and Sculpture. I earned a BFA and later after grad. school a MFA. I knew I could have sex with women, and not worry about getting them pregnant. So I never had to wear (condoms). I did always struggle with depression and anxiety, but until now, didn't realize it was probably because of my low testosterone. While this one thing I learned, is not a healthy choice, however when I discovered alcohol relieved my daily anxiety, I drank small amounts of it daily. I was never drunk,...just a tiny bit more relaxed, and it served me well. I never crashed my car, or passed out, or lost a day of work. I had learned people referred to it as "liquid courage". And I saw it as such, and utilized that way. It allowed me to buy and drive my motorcycle. It helped me lecture before a classroom of strangers. It may have been more of a "placebo", effect, since I never allowed myself to become drunk. Later in my 60s I was offered psychiatric medications, to replace the booze. They didn't work and I hated them. I'm presently sober, and off alcohol and all psych. meds. too.
Condoms aren't just for preventing pregnancy
Were you not worried about having a child then?
@@flewawayandaway4763 I was sterile, even though I had some small amount of testosterone being produced. Even before I was receiving testosterone injections, I went through puberty. I was able to grow some facial hair, though it was wispy. My voice lowered in tone. My doctors made it clear I would never be able to father a child. At the time, I wasn't able process it. My one doctor spelled it out,....saying: "Go out and have all the sex you want", because your sperm will not be able to produce a baby". I could always adopt a child, if I wanted to start a family. I was older when I began having sex, and it was kinda cool, that I never needed to wear a condom. The time period was during the height of the HIV/AIDS scare. I was having strictly heterosexual sex with women, but the fear was at the time, was,.....having sex with multiple partners, & without using a condom, could put you in contact with a woman who (was carrying the Aids Virus) unbeknownst to herself. So I did wear one a few times,....if I thought the woman was kinda of sketchy. I met women through a dating service,....but not everyone was completely honest.
Success!! 🎉 thank you!😊
@@UseYourManners123 Well, yes if you keep plugging away. Being sterile isn't so bad. One can always adopt a child if that is your goal. Low testosterone doesn't help with depression, and maybe if I was younger, I'd re-examine the patch or salves. Maybe they have improved testosterone supplements, I think I read there is a product, a slow release (pellet) that can be surgically implanted under the skin of one's arm. I could have gotten into body building, to improve my muscle mass. It wasn't that important. I was a male, there was no denying that. Growing a great beard or mustache, wasn't important. I had decent head hair, I grew mine long. Even at age 70, I still have most of it.
He’s a brave man to come forward like this! A true picture of courage.
Why? He has just got a medical condition.
@@jonathanwetherell3609 Uh… did you hear what it did to him? I can count on one finger guys I’ve heard discuss something as intimate as that. He did it to help others who might have this extremely rare condition and not know it.
only women are brave, dont you know?
@@theophrastus3.056By listening to his accent, you can't tell he isn't american (it seems he's from UK), so probably he wasn't mocked because he has this condition. Just because in american society people are mocked because of their condition, it doesn't mean that it's the same thing elsewhere!
@@vervideosgiros1156 I made no reference to his accent, which seems irrelevant to his story.
My oldest brother had klinenfelter syndrome. I just learned that after he was dead (some 30 years ago). I wish I knew that before. His life could’ve been easier.
Congratulations for helping others with your story.
How did you find out?
Maybe we should learn more about intersex people.
I know it's his not an issue of being Transgender but my doctors have said I'm pretty much non existent in my genitals. And I am transgender. I wish people would be understanding of gender dysphoria as they seem to be able to empathize with him but damn someone suffering from gender dysphoria by calling them groomers and other nasty filth. I didn't choose to be born like this no more than he chose to be born the way he was. In calling me crazy doesn't change how I was born it just means you are ignorant in how many ways a person can be born.
Thanks Seamus, I'm glad you went searching and had your problem diagnosed and treated. It's good for us to be educated about lesser know chromosome abnormalities. I think a lot of people think 'Down's Syndrome' along with chromosomal problems.
Yes! XXY is actually the most common chromosome condition in men, but since we are hiding in plain sight it is never diagnosed. 75% of men will die never knowing.
@@LivingwithXXY I dont get it how one doesn't know... I've thought every man has tiny testicles, therefore you should know when you have KS... or am I wrong? Please help!
@@LivingwithXXY is it more common in Jewish or uk 🇬🇧 populations? or background and or DNA does make a difference? and can the mothers wome and or changes in chemistry change sex and DNA midway through pregnancy? 🤰 aka what is the risk factors in getting XXY? or XYY? or having XX but born with male sex parts?
when he said sensitively what did he mean? as trans male's to females mention ( im sis-gender, not that it matters ) there nipples being more ect. and i think 🤔 them saying there balls less-sensitive after HRT/bumping up oestrogen
@@rz5b1qszkdf44 What, you think men go around examining each other's testicles to know what's typical and what's not? WTH?
The bravery of this man is so admirable.
courage is the appropriate term.
What a brave man Seamus is. Not only is he working hard to live his best life but he is sharing his story in order to help others. Good for you, Seamus. Keep on moving forward brother.
I’m XXY - I was diagnosed with Klinefelter’s Syndrome at the age of 10 in 1979, when it was also found that I had an undescended right testicle. The docs tried to bring this down when I was 14 but were unsuccessful and in 1992, I had it removed with a prosthetic one put in it’s place, my left testicle was pinned in an area where it wouldn’t go cancerous, as it was still producing a little testosterone despite being chick-pea sized, and another prosthetic was put in to even me up.
I was told that having an undescended testicle is common and it usually gets sorted out as a baby. Klinefelter’s used to be quite rare, but obviously with the internet and medical advancement, that has changed - still 1 in 550 is quite rare (it used to be 1 in 5000, last time I was told years ago) but to have Klinefelter’s AND an undescended testicle is rarer still !
I’d confided in a friend at school about my op at 14 and they told everyone, after which I was known as Benny One Ball, Benny being a nickname, and this caused me untold misery. Of course they weren’t to know that I’d end up with THREE ! LOL, so I suppose the joke’s on them now !
I’ve been on testosterone replacement since May 1992; in this time I’ve had fortnightly injections, daily patches, 6 monthly implants and am currently on 3 monthly injections.
I had behavioural issues as a child from 7 to 17 and prior to seeing a psychologist at aged 8, I couldn’t tie my own shoe laces.
I was diagnosed with Emotionally Unstable Personality Disorder in 1998, and am also Gender Dysphoric, but despite feeling like a woman trapped in a man’s body, I decided not to pursue gender reassignment because I’m 6ft 5ins, with size 14 extra wide feet (US 15) and also on crutches, so getting men’s clothing and footwear is difficult enough - can’t imagine how I’d go on trying to get into women’s !
I have a lot of illnesses and am registered disabled.
I also came out as gay when I was 16, I’m currently single but have FWB’s.
I’ve been told that although I will develop Osteoporosis, I will stave it off until I’m into my 60’s due to starting on testosterone replacement when I did. That’s something that will go nicely with my Osteoarthritis and Fibromyalgia amongst other problems ! Just something else to add to my list and no doubt more meds !
I have a good outlook on life now, after failing at suicide, and almost dying when I was 42 from two massive Pulmonary Embolisms in each of my lungs in 2012. I don’t worry about bills if I’ve not got enough money to pay them - I just pay them in instalments instead.
I’m kind and helpful, having done voluntary work for various charities over the years since the age of 16 with only a 5 year hiatus between 2012 & 2017 - I’ve even done voluntary work when I worked full time too !
I’ve been used as a ‘teaching patient’ in the past, for nurses and doctors who want to learn more about Klinefelter’s Syndrome - at the time I felt ‘special’ but also a bit of a freak !
I’m quite happy to talk about my XXY and how it has affected my life and continues to do so, so if anyone wants to reach out to me, be my guest.
My dil is intersex and trans, intersex people are way, way more likely to be trans. It is also common for intersex people to be very tall because of low hormones during puberty. My dil is 6 foot 3 inches, not quite as tall, but please don't let your height hold you back! Because of her condition she has always had androgynous features, no facial hair and a more feminine body shape, so she just looks like a very tall woman and most people have no idea.
Wow, you have really been through it! Good for you for keeping on.
Hope you are good... you went through that.. sorry!
Thanks for sharing your story 🎉
My neighbor struggled getting a diagnosis of Klinefelter Syndrome back in 1988. I am so glad your mother was so supportive.
Seamus is a great guy, doing everything to stay great in a complicated situation. Always a pleasure to see strong people not yielding to the disease.
Nothing to be aseamus about
What do you mean by "not yielding" to the disease, I was diagnosed when I was 20, I am 53 now.
sounds more a genetic disorder-first time hearing of it
It's not a 'disease' its a genetic condition; I have Tuberous Sclerosis 1 which means I have a gene deletion in my DNA which means I don't suppress tumours. This genetic condition is associated with various, separate tumour diseases. I have tumours in my brain, eyes, heart, lungs, liver, kidneys and uterus. I have also had 3 diagnoses of an associated, ultra rare cancer (less than 1 per million) in my kidneys, bone in one finger and uterus.
There are many 'invisible' genetic conditions that people have that are not apparent to the onlooker and which cause daily struggles for the subjects.
I regard myself as lucky that I have been able to work full time, have a family, study Computer Programming to Bachelor level and continue to be reasonably able to enjoy life at 70 years old.
Not a disease at all hun. 👌🏽
Very brave man to do this interview. Proud of you mate! You’re bringing a lot of awareness of this condition. Helped a lot of people. Thank you
He's quite brave to talk about this openly and publicly. Representation for people with uncommon conditions like this is important!
So sad for the folks in America, that will can't access to reproductive health care. Imagine having a problem from birth but you have no rights to help you with the symptoms because of the religious of some people....
You do realize that making rules based on incredibly rare situations isn't a great way to make a stable system right? It's also very very obvious why people don't even want to take a step down certain path due to humans tendency in fulfilling the "slippery slope fallacy" (not really a fallacy since it happens all the time).
But hey let not let history play any sort of role in determining wise decisions.
@@mgallusAh yes apparently giving these 'rare' people the rights they deserve suddenly means there will be impending doom.
Quit it. Giving the minority something good isn't going to affect you than you think it does.
@emargaux the other comment was ment for another post... oops...
Anyway they are human so they do have rights we just don't cater to them. They have to figure out how to live and fit into the bigger picture but still we don't make rules based on exceptions.
in other countries the same applies? Its almost never routine to check someone's chromosomes unless the doctor suspects you being at risk of genetical diseases which poor reproductive health isnt inheritably an indicator of
Low testosterone is no joke. I'm 31 when I was diagnosed with low testosterone due to a side effect of anti anxiety meds ( only after 2 months!). I went from fit, active, high on life, to chronically fatigued and depressed, a lot of symptoms the Seamus mentioned. If you're male and you're ticking the boxes, get a blood test, low T can be caused by multiple factors and it's hell! No way to live your life.
I truly feel your pain. I'm 28 and I'm impotent and it is truly a life not worth living for. but always hormone therapy. my condition is a pituitary tumor.
Yes I feel so fatigued all the time
@maxmushroom111
You have a reason to live dear. Everyone suffering this disorder does too. Push through this. You'll be glad you did.
Jeremiah 29:11
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
anti anxiety meds and SSRI’s have been proven to mess with the body like that. low testosterone is dangerous in general as it’s the hormone that helps keep everything in function, so yeah i would recommend anyone who feels fatigued or low immune system to check with their doctor and is also a serious problem of XXY.
Not to nitpick but does 2 months even count as chronically fatigued and depressed? It seems kind of short even though I'm sure it feels terrible. :)
I have XXY and I didnt find out until i was in my early 50s, so pretty late. When I did find out i felt like a freak, but i had always felt freakish and not normal , not like other men . I suffered terribly from humiliating lack of confidence with other men .I had an operation to remove both testicles as I was ( in my mind) protecting myself from cancer . I had implants but because my sack was tight , they could only replace with same size balls . BAH !
You’re not a freak. No one is perfect.
This made me cry because I never heard anyone talk about this and I'm pretty sure I know someone who has this. I'm going to have a chat. Thank you so much! Eyes opened is an understatement.
I have Tuberous Sclerosis 1 which means I have a gene deletion in my DNA which means I don't suppress tumours. This genetic condition is associated with various, separate tumour diseases. I have tumours in my brain, eyes, heart, lungs, liver, kidneys and uterus. I have also had 3 diagnoses of an associated, ultra rare cancer (less than 1 per million) in my kidneys, bone in one finger and uterus.
There are many 'invisible' genetic conditions that people have that are not apparent to the onlooker and which cause daily struggles for the subjects.
I regard myself as lucky that I have been able to work full time, have a family, study Computer Programming to Bachelor level and continue to be reasonably able to enjoy life at 70 years old.
You've just saved many men from feeling depressed and confused about a subject they wondered about. Thank you for your bravery.
Awesome story, your mom is from a medical background. That really helps! My dad was too, and he found my situation right when it caused issues (non-descending testes when I was 8.5), and he sent me to a university hospital for 7 days for observation and testing, back then in the 1960s
I had a horse with that condition; he looked physically like a gelding, but he completely acted like a stallion; i couldnt put him in with any other horses, he would fiest them, and i had to ride him with whip and spurs, he was so fiesty, u couldnt control him, he wouldnt obey without them. ive had several horses, never rode the other ones with whip n spurs, ever, this one, u had to.
Could he have an operation that would help him or horse testosterone?
@@Lauren-vd4qe did u do chromosome test for horse?
@@uroy8665 no teenager can afford a chromosome test for a horse.
@@pegs1659 He seems fine, as for his fertility that's just out of the cards until we can edit DNA and use stem cells.
I have XXX in 1% of my cells. You wouldn't think it would affect me much, but it does. I've had 2 miscarriages, & a Trisomy 13 baby boy that died at 12 days old. I was lucky enough to have 2 children with above average intelligence. I also have a very rare liver disease called PSC, along with other diseases. I don't socialize appropriately, so I have very limited friends. I didn't know I had XXX until I was in my 20's, when I had the Trisomy 13 baby.
half of American will have a brain melt because they would think you are a ghost.
My son also has an extra chromosome xxy,but he has a child..it is not impossible to become a father.....good luck to all of you.
I have Klinefelter syndrome.
I am married and have been trying for years to have kids. It’s been really hard. I have no facial hair and I’m 39 years old. It’s a struggle but I gotta live thru this. Great story.
Is there anything I can do to help grow facial hair. Thanks in advance.
Shave your face. Even If you don't have hair.
@@hectorsilva401 that's definitely not true
Rub minoxidil on your face. Guys grow beards with that
Testosterone cypionate injections, unfortunately if you’re KS unless mosaic you can’t have biological kids. And Testosterone, which is protocol for KS; Also causes infertility.
You can use Minoxidil to grow facial hair. You can take advice from a Dermatologist regarding this.
I'm so very pleased you found out about yourself and found a solution. What a gift. And you are helping others who may need to learn as well. So good of you to be brave and find a solution and then go out and help others. Be well and the best to you and yours !
Seamus, not only are you brave but you are an angel. To speak honestly about your journey opens the door for others to learn about Klinefelter Syndrome and how they can be helped. So many people do not know about Klinefelter Syndrome , Turner Syndrome, Jacob's Syndrome or Triple XXX. Thank you!
What a great guy for letting others know about this condition and how it can be treated. It seems like it must be pretty rare and not easily diagnosed. I'm glad he's feeling so much better. Kudos to his parents as well for being there and supporting him.
Being born intersex its not that rare. Many people are intersex like him. The "i" letter from LGBTQIA. Many female models are intersex with XY cromossomes, and basket ball and voley ball players as well.
it's easily diagnosed if you understand the process time consuming maybe too but process/diagnosis sometimes not accessible cuz genetic testing is expensive and not available in all regions as well as contributions from diagnostic error part of inter-rater reliability essentially doctor error.
I'm the opposite- I have just one X chromosome (Turner's syndrome!). Lots of similarities- I'm also very short due to missing some growth factors I was meant to get from my missing chromosome. So interesting hear his story... not an easy diagnosis, either way
What a blow, to learn who you thought you were is gone, and who you are is something you don't know about. You're giving a gift to people.
Respect to you Seamus! Thanks for sharing brother.
Much gratitude, Seamus, for sharing your story. Thank you, ABC, for coving this important topic.
May we all feel acceptance for the ways we are different from one another, and understand that such diversity gives us a more vibrant world and variety to expand our own learning and experiences.
May this information get to anyone it is pertinent to, and may it help all of us feel compassion for those with differences who need acceptance because of the differences.
I believe you are more of a man than 90% of weak men in today's world plus you have good enough physique looking at the general population...
maybe in english speaking countries there is some difficulties getting diagnose, but in the rest of the planet, you can tell by puberty or earlier, i met a few klineferters, one quite recently and yes he didnt know, he thought it was a hormonal issue, i didnt tell him but yup, he fit the bill, it look like it was treated with human grown hormone for some bizarre reason ( my guess is the doc was a raging homophobe), instead of testosterone which would help since they dont produce near enough of it, if they get diagnose later in life they pretty much screw, which i see it in north america as there is this taboo around sex.
👏🏾👏🏾👏🏾👏🏾❤️. Glad to see more XXY guys sharing their story. 😎👍🏾
Love your work, Seamus! So proud of you!!
Good to see examples of intersex people when politicians are trying extra hard to police bodies and gender these days.
I'm really happy to see 100% positive comments here. I guess the haters can't find any way to blame intersex people for being a bit different. If this was a video about a trans person, we would see about 40-60% of comments blaming and shaming. I have known two intersex people. One they did surgery on as a baby and chose the wrong gender expression. Massive distress was caused by this. The other person had a mosaic of different chromosomes throughout their body. They ended up transitioning too. Whatever one's situation, a bit of kindness means so much for someone's mental health.
I was diagnosed XXY before I was born and I am now 20 and was diagnosed with osteoporosis as well. I was offered the option of getting testosterone injections but I have declined since I’m in college and will soon run out of health insurance at the age of 21. Because of this, I’ve started my journey working out and in the past I have done sports so I know it is possible for me to build muscle. I know I have to work 10x as hard and I have finally found the right diet as I’ve been told by my doctor and endocrinologist that there are no current dietary plans that have successfully worked for those with XXY who are as skinny as I. I hope I can share my journey with everyone one day to hopefully convince others that is possible to get ripped with XXY. Until then, let’s see.
I take testosterone and the difference of having low testosterone and normal levels testosterone in your system is huge! I would still try to get access to testosterone if you can, osteoporosis is no joke and injections may be cheaper then pills or other methods
Doctor here. Please take testosterone.
@@katar9090as a female who discovered I have osteoporosis after menapause ( lost of estrogen), I take one pill a week , do leg weight exercises. I felt a difference in 2 weeks. I will take this for 5 years. Use modern medicine, research has been done for decades to help you. Peace\ NorCal 🌴😎
@@dbandy18 coming down to without insurance and having to do it everyday is one thing, but the fact I wasn't able to do tests for other diseases because of my lack of insurance also affects my decision. The type of career I want to take also would view me as a liability if I had to take testosterone because I would have to have access to that provider.- asthma is also an issue with it
I just subscribed to you so whenever you decide to help others with what worked for you I’m here to take notes! 📝 Thank you! Oh and was there nothing to prevent osteoporosis for you? I did not know it was a symptom.
My brother-in-law was born with XXY. Don didn’t find out until he and his wife tried to have kids. (He was born in 1952) He had pretty serious cognitive problems and a very passive personality and was easily taken advantage of. He never had testosterone supplements nor received any counseling. Sadly he passed away from bladder cancer in 2015.
I have 47xxy and neurofibromatosis type 1 but it doesn't hold me down
I also think be proud of who you are
No matter what you have
How did you get diagnosed?
@lelouchdibritannia4508 mum had nf, and my mum had my above 30 she had the test for Downs syndrome
I my mum and dad know before I was born
My sister was born with a extra chromosome and she’s completely fine. It’s a miracle really.
We don’t actually know how many people with zero issues have additional or fewer chromosomes. We don’t really check unless there are symptoms or outward signs.
Is this intersex
@@cupidok2768intersex is different
Is she extra tall?
@@mujkocka she like 5’10
You are perfectly, yet uniquely made! Thank you for sharing your story, so that others might learn about this condition. Glad you found the right people to help you, and that you found your way through this. Your Mom is wonderful!
That was eloquently expressed, Monica. Thank you.
Now this means sex is a spectrum.
And that gender is not real
And
It's a 1 in 500-1000 males occurrence, not really
He's literally a male, he even says so in the first minute
The issue is that sex can mean chromosomes or the physiology of the person. There are only two sex chromosomes with a limited set of variations. However, there are many ways those chromosome can be expressed, leading to a huge spectrum of sex-based variations. Intersex is an obvious one. An interesting condition is Persistent Müllerian duct syndrome. Just because each one is uncommon or rare does not mean that they can be dismissed. There are so many variations that there is indeed a spectrum of sex-based physiologies. And this is not even looking at gender!
@@SomeRandomPiggoat least 1 in 2000. which means it's 0.5% of people, and larger than the entire population of Canada.
edit: 0.5%
@@clobre_ 0.5% would be 1 in 200, do you mean 0.05%?
For someone with low testosterone, you would never know. He looks like a very handsome manly man.
I found out I had Klinefelters when I was 30 years old. After years of gels, patches and shots yielded little satisfaction I opted for the Testopel insertion procedure and I feel WONDERFUL! I feel vitality, alertness and a general feeling of gratitude for having made it this far. If I could just rid myself of this awful sense of anxiety (I've had it all my life) my world would positively change.
What is that. I couldn't get testosterone so I bought it on streets and got another doctor to order tests so I could do it under the very best information on dosing and levels. Because of that I get denied everytime I try to get some. It is insane but they say due to me being in recovery I should just go without it . They don't understand I self medicated for years and I've been clean for so long but test made me more than just happy it made me feel the best I ever felt and it felt natural like I was 18 again
Post opiates I couldn't get any satisfaction from anything ever. And I waited a full year to try test and when I did 4 weeks later I was amazing
What side effects have you experienced with Testopel? I'm on Tostran 2% gel and am looking for an alternative
Were you able to have your own children?
When you take a deep breath, you get rid of anxiety on the exhale part.
Very articulate. Very accurate. Very brave.
He is Amazing!
It’s remarkable how different all people are. It makes doing the right thing for each other very hard to do and it is really wonderful see someone find out what is right for them.
It's a wonderful video because most of the information on XXY is outdated.
Seamus, I'm so happy that you're now feeling stronger and fitter, physically and mentally. You're a real star in speaking out to help others. Congrats!!
I wonder if there are any XXY with gender dysphoria. If you do are XXY w/ gender dysphoria, comment below! 0:51
I´ve just had my 4 years son diagnosed... It´s som important to fins videos like this! Thanks Seamus for sharing you experience!
I was diagnosed befor I was born now I’m 19. It is hard accepting it and living with it but it’s not like a death sentence. The way I see it is we are normal but just with an extra x. I sometimes forget I have it.
What to expect. Men are usually taller and have a more feminine shape and thare are 2 versions mosaic and non mosaic one means you can’t have kids and the other means u can. Men with this have higher levels of estrogen and low levels of testosterone. And need to get testosterone in a pill, shot, cream, or patch. I’m here is you have any questions.
@@bigmike4419 hello, I'm searching info, don't know where to find it , besides internet
@@bigmike4419 what symptoms did you have bro? Are your testicles smaller than average? I'm 19 too
Why was he tested for XXY at 4 years old? It is too early for symptoms to show up...
@_JulK_ Synptom definitely also shows as a kid: It can affect general growth, and often causes learning disabilities, speech impediments and motor issues.
Which tend to be the reason why they get assessed and then diagnosed as children.
Don't ever let anyone put you down for what you can't control, what you can control is what comes out of your mouth. Good on him. I find honesty attractive.
I was diagnosed befor I was born. Thanks for bringing this into the spotlight.
Homie with the extra chromie
Hey Seamus, just know you are helping so many men in your position with your honesty and bravery to be so candid.
This Is A Great Man ~ Brave, Honest , Open , Strong & Grounded
His desire to inform and educate is generous beyond measure 🕊️
Thank you telling us your story, Seamus!
He said he has small testicles, if you ask me he has more balls than most to talk about it in a public forum.
as a #2Spirit person…
we (2 souls 1 body) can affirm too that gender is distinct from sex
it’s not arbitrary either
cheers
Thank you I was just diagnosed with Klinefelters syndrome today and felt very alone, my biggest excitement I’ve looked forward to is being a father but now it feels crushed
There are options, this is 2023. Check it out like he did and don't give up.
I’m sorry to hear about that. I hope things go well.
How much did the test cost? I’m thinking of having it done.
I'm sorry but when he described his issues with erectile dysfunction as "up and down" I had to laugh.
Me too 😂
My great son may have this. My daughter is 19 weeks pregnant and i was were worried and concerned but know you have given me comfort. Thank you. God bless you.
Reach out to our nonprofit if you have not done so yet.
So brave to open up about this. I wish more people would, as there is such a stigma surrounding genetic disorders such as this and it should be more accepted and known about as so many people are affected.
I’m asexual, I don’t know why this happened, I have no desires to be close with someone intimately. I don’t care about it anymore. I’ve just accepted being alone because it’s not fair to be in a relationship with someone’s when I can’t bare to get horizontal. So I’m different too
My bio teacher was talking about 47 XXY in class today and this video popped up on my timeline.
Really interesting.
Thanks for sharing your story !
I dont fully agree on the it doesn't make one feminine. I was fighting with my identity since I was a little kid, my mom told me you've got 47 xxy at age 13 but I didn't fully understand it but it did kinda make sense why I felt more feminine and more related towards women. So I transitioned at age 18, now 30 and happy with myself. 🎉
It's possible that it's the XXY, but it's also possible that you're just a person that is more feminine. I think you're awesome either way :-)
Too bad you couldn't just accept yourself as you were. I am female. I more relate to men. I think this is where a lot of transgenderism comes from. If you're male and you like feminine things... You have to transition. Vs just being a male who likes feminine things
@@brendalg4 That's cool and all that you aren't educated enough to know what it's all about. But that's fine, Donald Trump said he loves the uneducated 😆😆😆👋
@@theundone777 I believe that a lot of trans people are xxy but aren't aware of it 😅
@@CashLundBeats I don't know why you are making fun of my education or bringing up Donald Trump. I feel some people have medical conditions that make them want to transition... I feel the majority of people that are saying they are trans now are not. Not saying you aren't. They are depressed and see people doing it all over the media. They think if I do that I will feel better too. There are studies saying that 85% of children outgrow it. (Not saying you will)
Good on ya for speaking up about this 😊 . Body issues need to be taught in schools.
He’s very brave for coming forward about that.
Low testosterone? Still more gorgeous beard than mine
he is probably undergoing treatment taking testosterone
I just happened upon this video and clicked. What a wonderful man you are to present your situation to the rest of us who need education on this subject!. Your way of explaining is profound and essential! Without widespread information, there will only continue to be ignorance, which breeds negativity. Bravo, young man!
My sister was born missing a chromosome and has many, many issues because of it.
bro is more man then i am
I’m glad more people are talking about it, because that is the syndrome that I have, I’ve been diagnosed with that since I was 14 and trying to maintain testosterone treatments has been tricky over the years.
Bully: loser
This guy: well how many chromosomes do you have 😏
Who the hell wants kids? You'd have to be mad to bring kids into the world these days. Just adopt if you're absolutely committed to being a father. Your sperm really isn't so magical that the world needs your offspring.
watching this really helps me be at ease as someone who also got diagnosed with klinefelters at 16 its nice to know someone talking about it
I'm glad it helped. There's nothing wrong with having Klinefelter's or any other medical issue
Yoo I'm Klinefelters too, except I'm a lady so it all worked out. 🏳⚧
😮🫣🐄🔨🎉😭
Same here 🏳️⚧️🏳️⚧️🏳️⚧️