I have read a lot here and here are my thoughts

Posted , 2 users are following.

A lot of what you guys are saying here is to be totally honest not helpful. All your discussing things that typically a person who has this doesn't really care about like I don't care if it's a disease or syndrome a spectrum either way it sucks at times.

The problem is we are not all the same to this disease. If I were to explain from my side things to a future person with this disease you need to some how to stay calm. you will get it and at times will feel like you are mute or no one gets your language, but if keep trying will work out. For you to get things it is going to take a lot but you need to continue to be effective in the sense of trying to learn it and there are multiple things basically things for you might take a little longer. And at times you might have to do it your way to come up with the same result.

Test sperm before 16. If there is save it.

This syndrome for me is ever hard. Doctors to this day still make me in human and or poke and prod with out concerns for my feelings. I have had to change endocrinologist since moving to fl 7 times. A lot of doctors in our disease is a money maker. And recently since the new HIPAA law things has to be written so now on paper you are basically dissected on a page. And what I don't like about it is is they listed under a problems category and to me I don't see what I have is a problem.

If you have the money to afford not only a tutor I would highly recommend somebody who can work with the individual in social skills.

For me the hardest things to digest is that yes I learn slower and yes I look completely different different is not always a bad thing.

Being taken out of class was hard. Doctor visits don't really get better, but if you have a good doctor it will not be as bad.

I Have A Pectoral chest or a pigeon chest. Growing up was hard, but even with all the things that did not go my way in the end would not change thing. What I have now is quite honestly impressive.

I own a successful business, I have 3 trucks and a nice family car that has 15k left. My house and everything is paid off. I am only 30.

I did all by myself. So, trust from at very least if you buckle down and get into your niche things will work out monetarily.

So, yes things will work out kind of. My present is the happy. For me l, I felt like everyone was not talking my language and at points I could understand but just could not say it right. School was hard because you to succeed have to have extra time on things and that means that while you are working really hard to learn what most get in a snap takes you 3, 5, 10 more times to just grasp it.

You loose out on other things while pulled away. You will at points be okay with leaving class but will hit you with that you are different. It's okay. I waadequate fun. Of and called stupid to face and behind back by students, ias, teachers/ administration.

Doctors office feels like you are an alien. It is rare after adolescents to find a doctor that has bed side manners. The fact that it takes you longer to learn and how you see self is crippling. Even if makes not effort to say depressed, most likely he is and doing what I did.... hide from it.

I refuse to take therapy. I have done enough re search to question if it is even worth it. I Though Don't Shop The Worst Of it.

I will say 100 percent the biggest thing t out need to ensure from when child to.adult no pill fracks with t levels. Because I am not doing therapy, once t stops, I in trouble.

Right now at 32 I have recently had a weird response that they can not explain. I had a t level a year ago and before level of 230. This year, I havery more stress but my level shot up to 280. It is not fluke because checked 2 times. I have always been low but no one can explain.

School was hard, but people not allowing me to feel normal is the hardest thing. As parents t r not to overly coddle kid and or show them that they are different. Tell child after 12 what is 60 percent t in store. Do not say without test done if can or not have kids. Leave it as wonder. My li

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  • Posted

    I hit send. It is hard life, but support is good, but try to let kid be them. Be patient, be there for them. I found typing to be helpful.

    A lot of what kid need to know needs to learn it on own and have way to ask.questions. some will be too much.

    It is a really hard thing to bare. Specifically when wife wants family.

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  • Posted

    Well the site is called Patient UK, not 'Prospective patients in the future.'  rolleyes

    This site is not for people looking for information, although it can be used for that purpose.  It's for people with all manner of diseases to share their thoughts and concerns with others like them, exactly as you have done.

    If you've been to a fertility specialist they ought to have told you that sperm can be stored fopr a maximum of 7 years.  In a normal man I have no doubt that some sperm from a normal ejaculation can last maybe 30 years in a frozen state  but generally 7 years is it.  BY 16 I would expct most XXY's to be suffering seminiferous tubule dysgenesis, they would have no sperm in their ejaculate, for the majority.  I'm told 50% of XXY males have the odd one or two sperms in their ejaculate from puberty onward, which might be true?

    So for peace of mind, or absolute confirmation, sure, have a sperm test or advise such for he newly diagnosed,  but it's best not to get peoples hopes up.  

    I have 2 children by donor.  I can't tell the difference between them and my brothers children.  

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  • Posted

    You seem to have succeeded better than most xxys, so you should be proud to be who you are. Every xxy may have troubles in their life, but we may accomplish greater things in life as we grow older. Early childhood is difficult.I never had any friends in my school years or even now. I did not have good grades in grade school or high school in the US, or even in some college cources.It did not the reason until I found out I had short term memory. I can read a book but after a month I don't remember what I read, so I would have to read it again. I have to keep a journal so I can remembe what medical problem I had and in what year. I was diagnosed with xxy on August 6, 1980. I always thought I was diagnosed in 1982 until today. So that is why I have a joureal of all my medical.problems.

    Every xxy male is different. Some like yourself are very successful in business. Some have college degrees.Some are highly intelligent.Some have some minor skills, but most are happy individuals because we have struggled more than the average normalxy male . Some have trouble with the law.Some are in prisons.Some are transgendered. Some are intersexed. Some are gay, but the majority are heterosexual.

    There is no book that can teach a young person with xxy on how his life will be now or in the future. I wish there was. We have to be able to reach out to others like ourselves to truly be comfortable with ourselves. No one can tell you what your future will be, not even doctors because some doctors still believe xxy are mentally retarded or criminals or babies should be aborted. There xxy are organizations in the UK, in the US, in New Zealand or Australia. But they don't even have all rhe answers of what a xxy person will be like.

    I hope you like my answers, but if you don't .that is okay with me. Good luck in your future ventures or adventures in life

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    • Posted

      "You seem to have succeeded better than most xxys, so you should be proud to be who you are."

      cheesygrin

      I know you're not writing to me in this comment John75639  - but - it intrigues me.  biggrin

      Am I successful? I wonder, am I?  Then my mind goes though intricate details of what I've done good and bad, weighing up whether I can describe myself as 'successful.'  

      This "me" is all the me I've ever known.  I was XXY long before I knew I was.  Now I've known I'm XXY much longer than the time I didn't know, cheesygrin  

      To me a successful person is someone who has a job for life, who picked up new things easily at school, got higher education,  got on well with others, had a family, goes on holidays, owns more than one house, like a beach house too.  Can drive a car/motorbike/bus/truck/train/ (not all at ther same time.) cheesygrin  Someone who is mechanically minded, intelligent, thinks of others, is generous.

      If I had all those attributes I'd say I was sucdessful, I don't.  sad     

       

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    • Posted

      Well, I worked at a job that I had for 33 years .Due to all my medical problems, I am in debt. I don't own any material things like a car or a house. I have never driven a vehicle. I have never been on an airplane or a boat, ship or canoe. I have never been camping. I have no close friends, even in my early years I was too shy to be friendly with other children and did know to react when people wanted to be friends. I am a loner. I live with my uncle with other relatives. I don't own a computer. This device I use to communicate with is on a family plan. Although I went to college, my grade average was below normal, some classes I failed. I have never gone on vacations. I have no skills.I can't figure out on how to use a computer properly. I have no mechanical skills, so I can never fix a vehicle or any household device. I still cannot figure out my dvd player. The instructions are hard to understand and yet I use it to watch movies. My only skill is writing short stories and reading everything about xxys.I use a medical dictionary to understand medical terminology. I don't think I am intellectual or have a high IQ. But I am a curious person when I read about a disease or disorder I never heard of before. I don't speak any language except American English. I do understand some American Sign Language motions. I look up UK English words when I write on the website.I don't know if I told you, I am gay. or transgendered, yet I have never had a male lover or boyfriend. Girls were never In my life.Too shy to approach anyone male or female.Yet, I am too old to change.I don't get depressed now, but in the past yes. But since I discovered that I was xxy, at 29, my life changed for the better. I don't worry about all my medical problems. If I did, I probably would have ended my life years ago. When a doctor tells me they discovered another medical problem from my blood tests, I research it and deal with it, since it is part of my life.I usually go the the movies alone. I love all types of movies, but I stopped watching torture movies because I didn't like seeing people cut up on screen. Life is wonderful as long as you don't worry about the things you could have now or in the future. As long as you have at least family members that care about you, then your life should be as great as you like it to be..Don't worry about what others say about you. It is your life. Enjoy life everyday. Because there is someone else in the world that is in worse shape than you are , at this point in life. These are my thoughts and not necessarily the thoughts of any xxys.Am I unique or not. Judge for yourself.

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  • Posted

    No one can predict how you will grow up to be. Your have a mind , use it. Everyone has to find their path on how to deal with their problems.No one else can understand what you are feeling or can tell you how to overcome any medical , physical or mental problems. Doctors only have limited information so you can not depend on them for answers.

    That is why I look under medical articles on the disorder.It is not a disease. It is never referred to as a disease. If someone told you that, they are stupid and ignorant. Diseases can sometimes be fixed with drugs. This is a genetic disorder. It can never be fixed with drugs.Drugs can increase your hormone levels, but you were born with it, so it can never be fixed. I do not understand people when they say you get it during puberty, that is incorrect information. Every person is different.The many disorders I have are unique to me and no one else. You should never believe anyone that says because you have this disorder you will be obese,or have excess breast tissue, or your enamel on your teeth is disappearing or you have RA or a number of other disorders. Re

    E

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    • Posted

      Remember no two snow flakes are alike, therefore no two males are alike. Be yourself at all times. Believe in yourself. If you can change anything, it is your attitude. Be happy The higher powers made you this way. Live with it as best as you can, now and in the future
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    • Posted

      Hi John.

      It depends on what is being talked about.  If I'm talking about KS I'll say outright "NOBODY was ever born with KS"  I say that as KS only becomes apparent after the onset of puberty.  Most males wbhen they're diagnosed are over the age of the onset of puberty and the issue never arises for them. Parents however never have anything wrong with them and never question a word they're told by doctors, and those doctors so used to dealing with those above the age of puberty just transpose what they tell teenagers and adults to parents, and whaddaya know, suddenly the baby boys are born with a so far not present disease, and KS is indeed a disesse.  

      So Klinefelters syndrome is caused by the same means as AD/HD in us, and AD/HD in us can be present from birth.  So if an XXY boy does have AD/HD do we pretend he doesn't have a disease because the cause is genetic?  Why then would we pretend KS isn't a disease because the cause is additional X genetic material in the testes of affected males?  Clearly KS is a disease, since the word 'syndrome' means 'symptoms of disease' in short. Saying 'Klinefelters syndrome' is exactfy the same as saying 'Klinefelters symptoms of disease.'  

       

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    • Posted

      According to WHO, two tests are performed on pregnant women. Amniocentesis and Chorionic Villas sampling.Both determine if there is a chromosome disorder in the infant before birth.

      This is one reason some babies are aborted because some doctors still believe the child will be mentally impaired.

      At the convention in the US, at least 3 couples stated that they knew their baby was going to have 47 chromosomes and classified as having Klinefelters Syndrome. They did not abort their infant.But knowing their child was going to have problems, they researched 47 xxy before the child was born.To say children are not born with xxy, is incorrect information . Check out the information from the WHO. Or information on the two tests that are performed before an infant is born.

      Characteristics of xxy sometimes do not usually appear until puberty but that is not the case if parents already know their child has 47 chromosomes with xxy.

      At that coference, there was one grandmother who stated her daughter knew her infant had xxy but never told the child not even as an adult.He was going to be married that year and wanted a big family. The grandmother wanted to know if she should tell him that he would never have children but was told by counselors that he would find out eventually.

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    • Posted

      According to WHO if you're black and living in Africa you can reduce the spread of HIV if you have part of your penis amputated!  Personally I think that's a load of nonsense, but ignorant people can believe anything if they don't set their mind to thinking!

      So, I'd say  WHO has not a shred of credibility.  WHO goes where the money is, they were offered money by Bill & Melinda Gates Foundation, and they took it.  They don't care that the AIDS epidemic of the  80's and 90's began in routine infant circumcision mad America, and not a single butchery stopped a single man from contracting HIV!

      Do British doctors now recommend  teenage boys and men have their foreskin amputated to prevent the spread of HIV?  I still have all of my foreskin and I'm HIV-   as I didn't poke my penis into anybody who was HIV+  or if I did I was wearing a condom at the time. Condoms prevent the spread of HIV not circumcision as WHO PROMOTES!

      Now you don't want to read what I've already typed and I can't be bothered repeating myself.   But I do recommend you do go reperating this nonsense as if I said as you know full well I didn't, "To say children are not born with xxy, is incorrect information."    That you want to pretend XXY and KS are the same thing is your business.  Do you not ask yourself why you're not chatting on the Klinefelters Syndrome Group?  well the answer is I already successfully argued with Patient UK that KS and XXY are not the same thing.  

      As for second and third hand gossip from somewhere else,  I'm just not into that, I just don't gossip.  What a supposed grandmother was told by a supposed granddaughter about a supposed XXY, it's all irrelevant.  But if these people, if they exist, want to come here and tell me themselves what they experiencved, that I will discuss.   

       

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    • Posted

      The 4th paragraph should read:

      "Now you don't want to read what I've already typed and I can't be bothered repeating myself.   But I do recommend you don't go repeating this nonsense as if I said it,  as you know full well I didn't, "To say children are not born with xxy, is incorrect information."    That you want to pretend XXY and KS are the same thing is your business.  Do you not ask yourself why you're not chatting on the Klinefelters Syndrome Group?  well the answer is I already successfully argued with Patient UK that KS and XXY are not the same thing.  

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    • Posted

      Every person has a different idea about what to call thems elves whether it is a xxy male, Klinefelters Syndrome male, intersexed male or mentally transgendered male or asexual. You have your opinion and I have mine. My belief is xxy males are born with it. You may disagree, but we can be both correct. We are not doctors., but some doctors have no knowledge on 47 xxy chromosomes or how to distinguish men and put them inot a certain category.

      Every xxy men must decide what to call themselves. It is not up to me or anyone to label another person who has 47 chromosomes. Not everyone has the same traits as listed on websites for xxy males or my list of medical disorders.

      WHO is but one organization but not all people believe everything that is connected with that organization.

      Circumcision is a crime no matter where it is performed in the US or any other country. It is harmful to all infants. It is cruel and unusual punishment for infant males. It is considered torture in my opinion.

      But it is my opinion. I consider myself a xxy male with some transgendered tendencies because sometimes I feel I should have been a female. but I don't want any sex change operation. I am quite satisfied with having a penis even. though it is smaller than an average 47 chromosome male. Sometimes I wish I had larger testes but I don't want them cut off. My retracting penis is annoying at times but I don't want anything done with it. Sometimes I wish I had foreskin, but that was removed when I was an infant.

      Like I indicated before, every male with 47 chromosomes must decide what to call themselves. I chose to call myself a xyx. male. I am a unusual male with an extra x chromosome.

      You may identify yourself something different.

      According to the US rating in ICD-10, (2016) Q98.zero, you are Klinefelters. 98.one, you have more than 2 x chromosomes, 98.three, you are other males with a xx karotype. Q98.4, you are Klinefelters Syndrome unspecified. Q95.five, you are karotype 47xxy, Q98.six, male with structurally ab normal sex chromosomes. Q98.7, a male with a sex chromosome mosaicism.

      Q98.eight, other specified se, chromosome abnormalities male phenotype. Q98.nine sex chromosome abnormalite male phenotype, unspecified. Or you can can be Q 53.zero two, ectopic testes bilateral. Or Q55.two two, retracting testes. Or N50.zeo, atrophy of testis. Or Q99.zero, chimera with 46xx/46xy. Or 99.8, other specified chromosome abnormalities.

      So even the medical community cant decide which category a male should be labeled as.

      I don't know if this information will help anyone or if this website will allow this information, but even male has doubts if the are xxy males or if they change their sex by having their sex organs removed and become xxy females. But can these individuals beconsidered Klinefelters. I don't think so

      Every one has their opinions. Chose what you are. That's all that matters. You are what you are.

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    • Posted

      Well there are conventions you know, this is so we can all know what everyone is talking about, without confusion.  The reason we're called XXY is because X comes before Y in the alphabet, it's as simple as that. It has absolutely nothing to do with what sex people think they are, or how they personally choose to write the alphabet. It is a convention.

      Obviously I'm failing to explain to you that there is a difference between being XXY and having Klinefelters syndrome.  Klinefelters’ syndrome is a form of male hypogonadism, and some males are born with hypogonadism, but they're not XXY males.  This is very handy information.  Some males have Kallmann syndrome,  a syndrome they have to some degree prenatally.  They are definitely born with a syndrome, a low testosterone syndrome.   Yet they do not have delays in meeting early milestones, excessive linear growth in childhood,  or educational difficulty.  Therefore we know  these types of difficulties seen in XXY boys are not caused by low testosterone.

      Not all XY boys have the exact same level of testosterone in childhood, as it is at any other time in their lives.  Testosterone has a range of normal values.  XXY boys fall within that normal range invariably.  Kallmann syndrome boys however do not fall within that normal range, invariably.  XXY boys are not born with Kinefelters’ syndrome, as Klinefelters' syndrome is a form of male hypogonadism, which they do not have.  To me this is just so obvious it is elementary.

      I will not describe myself as the symptoms of disease, or as a disease. XXY males who call themselves KS'ers are doing both.  Klinfelters’ syndrome is the symptoms of the disease Seminiferous Tubule Dysgenesis, like a runny nose is a symptom of the disease influenza, get it?  Yes?   neutral

      The US military, aha, well I've known more than 1 XXY guy who did eventually develop KS, who also joined the US military.  The Medical personnel in the US military are not  noted for doing proper medical examinations always.  Having small firm testicles is not a good enough indication to them that anything is wrong.

      I've joined a few discussion groups on PatientUK to do with male sexual and reproductive health, and males generally are not very well served. Male sexual and reproductive health is not a top priority for the medical profession.  Recently I found a man on YouTube whose complaint was he hadn't started puberty, he was 27 years old.  How did a man get to 27 years of age and not get picked up by a doctor that something wasn't quite right?  The same way a man with KS manages to join the US military, by medical incompetence.

      So my first thought for the guy on YouTube was Kallmann syndrome, because all XXY boys start puberty.  However, not all XXY men report they started puberty.  That's interesting.  The research is easily verifiable, the word of any XXY man is not.  If he cannot come up with the proof of his claim I do not believe him.  He is mistaken.   I remember starting puberty.  It was exciting, not something I'd forget.  I also have my complete, as it can be, medical record in my hot little hands that describe me as having "good penile and scrotal development" when I was 17.  Some XY boys don't start puberty until they're 17.  17 is within the normal range for males for starting puberty.  By the way, the start of puberty in males is the growth of the testes and the development of the scrotum.  Most males won't even notice when puberty starts. Why would XXY males notice the start of puberty, people who often have expressive language delay, educational difficulty of some sort or other, who often find it difficult to find the right word for any given situation. Regardless of how intelligent they are, why should they be relied upon to give an accurate report of their own development?

       

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