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| Name: | Peter |
| E-mail address: | psajben@Bigpond.net.au |
| Comments: | Great Site,For Unique People,to share common problems as a group- together!! Anyone Interested,please contact me at my e-mail address! yes I was born with KFS,found out at 18,been on H.R.T, almost 19 years straight! All The Best, Takecare |
| Name: | Dawn |
| E-mail address: | edyarmond@yahoo.com |
| Comments: | My son was diagnosed at 1week old while doing a chromosome test for Down Syndrome. So yes he hasboth Down's Syndrome and Klinefelter's Syndrome. The doctors tell us that this is very rare. He is now 13. |
| Name: | amanda campbell |
| E-mail address: | a-jcampbell@hotmail.com |
| Comments: | My son has xxy was diagnosed when he was 9, before that everyone thought that he has asperges or autism. that was until we moved to rockhampton and our doctor ordered a blood test, wish someone had done this sooner. Reading all the information on the website put my mind at rest finally understanding what my son has. If anyone knows of a support group in Rockhampton, QLD, Australia, please let me know. My son is very special to me and I would like to understand him more. Many thanks. |
| Name: | williamcleary |
| E-mail address: | reliant18642003@yahoo.com |
| Comments: | Dear friends, Hang in there I was diagnosed with ks two days ago, my wife and I were trying to have a child. I want all parents and Ksers, to understand the struggle is what will advance you past the "Normal" people. through struggle and overcoming will serve you to advance in life. I have a masters in abnormal psychology and am going back to become a nurse, and am an ex-officer in the navy. You can conquer anything, it won't be easy. we are not quiters or freaks. we are adaptation, not mutation |
| Name: | peter drain |
| E-mail address: | santajoey@gmail.com |
| Comments: | just like to add, i too had learning issues , grew breasts, ok if you are a female lol, and displayed anti-social behaviour when younger. diagnosed when in my early twenties, low sperm count that is now diminished completley, initialy on injection but been on tablets, panteston, for most of the time. Not been on them for about a month and notice the diference. moody, angry, withdrawn etc. but sex drive has not decreased. constantly tired, lucky for me i have time off work over new year. Oh yeah, im from new zealand. would like to chat with others about thier journey too. sorry about spelling, not my strong point lol |
| Name: | peter drain |
| E-mail address: | santajoey@gmail.com |
| Comments: | just like to add, i too had learning issues , grew breasts, ok if you are a female lol, and displayed anti-social behaviour when younger. diagnosed when in my early twenties, low sperm count that is now diminished completley, initialy on injection but been on tablets, panteston, for most of the time. Not been on them for about a month and notice the diference. moody, angry, withdrawn etc. but sex drive has not decreased. constantly tired, lucky for me i have time off work over new year. Oh yeah, im from new zealand. would like to chat with others about thier journey too. sorry about spelling, not my strong point lol |
| Name: | peter drain |
| E-mail address: | santajoey@gmail.com |
| Comments: | just like to add, i am on panteston, tablet form. this site is an inspiration for me. thankyou so much for being here, God Bless you all |
| Name: | peter drain |
| E-mail address: | santajoey@gmail.com |
| Comments: | your story is very smilar to mine, i was diagnosed when i was 23 am now 44 |
| Name: | chris fiammetta |
| E-mail address: | Heyjudecf@yahoo.com |
| Comments: | My son is 32 with XYY after all I've researched & been thru at times he still has setbacks & would like to hear from others who are adult men & what medications they take. Never feel fully satisfied with the medications my son is prescribed |
| Name: | robert davis |
| E-mail address: | rob1a@q.com |
| Comments: | My nam, Robert Davis, I found I was klinefelter, when I had a blood clot, I was 26, since then I had 3 more, I've had ton's of ulsurs, by-pass in right leg, the doctor's found a block behind my knee, skin graff 4, hearing I was deaf for 40 years, solf plate so I could talk though my mouth, and not though my noes. I didn't have much schooling the teacher didn't help me for my brain didn't work right. I speend more time behind the teachers desk,, or in the cornor. do to the way I talk I was in spical Ed, for 5 years, then I went to school that didn't have class, and they put me into reugar class's, annd they went to fast. I was kict out. am now 66, I weight 2 1/2 pounds, and was given 48 hours to live, and am still going. My life I had to learn what I could, I drive, and live on my own for 30 years. robert |
| Name: | robert davis |
| E-mail address: | rob1a@q.com |
| Comments: | Am a xxxy, looking for others, am 66 |
| Name: | stacey drake |
| E-mail address: | wild4elvis@comcast.net |
| Comments: | my name is stacey. my husband tom was diagnosed with KS in 2005 at the age of 27. we found out because we were having trouble getting pregnant. we had routine test done for both of us and nothing showed abnormal. then a physician i worked with decided to run a chromosome study on tom. sure enough it showed 47xxy. needless to say we were devistated. we decided we would not give up, so we went to center city philadelphia and saw several physicians at jefferson university. through much stress of tests and constant reminders we may never have children, we ended having a daughter in january 2007. we were given less than 1% chance. it was a true miracle. tom ened up having a testicular biopsy and 6 sperm tissue were found. 2 were implanted via in-vetro fertilization, and 1 survived-- our daughter. (they only went in 1 testical) we are now in 2009 and ready to see if we can possibly do this again. please pray for us!!!! |
| Name: | Ed |
| E-mail address: | ethjr@cox.net |
| Comments: | I'm 61. Just found out about 3 months ago that I have KS. Always knew that I was different than other males. My last doctor ignored my requests about tests for KS. Found a new doctor who listened & tested me. I just lost my wife of 32 yrs & would like to find someone eventually. But with the way I look physically, that will be hard. My new doctor has me on an estrogen blocker. He's not sure what else he can do for me. Also found out I am diabetic. Good luck to all. |
| Name: | Melanie |
| E-mail address: | wmtysick@hotmail.com |
| Comments: | My husband was just diagnosed with Klinefelter's Syndrome. He is 30 years old. He is not currently on any form of testosterone therapy and leads a very healthy life. We had decided to try for a family and when nothing happened after two years we decided to seek medical attention and that is how we eventually ended up finding out he has KS. We were told about the possibility of sperm retrieval and invetro fetilization. I was just wondering if anyone knew of any couples with KS that this method has worked for? This has been an emotional roller-coaster for us both, and I guess we are just looking for a little bit of hope. |
| Name: | Lisa Letang |
| E-mail address: | lisa.letang@quantum.com |
| Comments: | We live in Seattle and have an 8 y.o diagnosed XXY before he was born. There are no support groups and difficult to find any information that will benefit our son. He is doing well in school with some special help, though gets overwhelmed when there is a lot of activity and has problems with his temper in social situations. I'm always trying to get more information on how we best support him, if there is anyone in the area that would like to talk or provide advice please contact me. The best to all, Lisa |
| Name: | Ben Terblanche |
| E-mail address: | barendh@yahoo.com |
| Comments: | Hi friends with ks,i am from south africa,and would like to know if their is anybody from south africa with this problem,keep well,BEN |
| Name: | chris fiammetta |
| E-mail address: | Heyjudecf@yahoo.com |
| Comments: | I have a son 31 years old with XYY. To all those whose children have this syndrom though it is a difficult road my advice would be to always be sure you are the number one advocate for your child because if not your child can very easily slip thru the cracks of the "system". My son today lives in a group home with 5 other young men, works 2 part time jobs and for the most part has come a very long way since his difficult younger years. Remember to advocate for your child, encourage & support & if you give your all your child should be able to lead a productive life. |
| Name: | emily |
| E-mail address: | emy31685@yahoo.com |
| Comments: | i am dating a 23 year old with KS. he was diagnosed w it when he was 11. he takes testosterone shots every 15 days. every 6months-year he sees his doctor so that they can test his testosterone levels. the shots have helped alot. i have noticed that he gets really short tempered around the time he needs to the get shot (couple days before). hes been told many times he cannot have children because he has no sperm count. i am from south shore, MA. if anyone wants to chat feel free to email me. its nice to know there are others out there. i didnt know anything about KS until i met him 2 years ago. |
| Name: | Neil |
| E-mail address: | ufoundus@iprimus.com.au |
| Comments: | Hi everybody, I am 51 and was diagnosed as ks about 18 years ago, I think having this has been an advantage for me. I felt something was not quite right during my teenage years, during puberty I started to develop breasts, I grew much taller than my peers and I began to suffer from bouts of lack of energy. However, although struggling at school, with the support of my parents, I continued to play soccer, rugby and cricket for the school teams and futhered my education at Oxford Uni. I was shy as a youngster, but I think in retrospect it was because of my height and willingness to please, that enabled me to stand out as it were from the crowd. I feel as I grew older, that although I felt as though I were on another planet compared to most men my age, I got on very well with both sexes and had a number of steady girlfriends from the age of 17. I have been married for 23 years and have 2 children, both girls, my partner and I agreeing to use donated sperm for both girls from the same donor. I occasionally treat my ks with patches, when I feel like using them. The extra testosterone certainly gives me considerably more energy, but it also makes me shorter tempered. All in all, ks makes me more intuitive, more compassionate, and less demanding, apart from the tiredness that accompanies ks, I remain unconvinced that I should lessen or lose the former to just reverse the latter. I found when consulting with andrologists and endocrinologists in both Melbourne and Adelaide, a common question put to me was, "What is it like having ks?" My answer was always, "It's like being me". I guess it may well take one to understand and appreciate on. |
| Name: | julie |
| E-mail address: | gjhelms@charter.net |
| Comments: | I have a 24 yr.old with k.s. If anyone would like to talk i'm available to try and help maybe can even help me. |
| Name: | Irene Simeonidou |
| E-mail address: | iren_simeonidou@yahoo.gr |
| Comments: | thanks for sharing. I just learn the baby i m carrying is KS. Your site enlighted me a lot, still i need a lot of information & support. if anyone from greece is here, i ll be happy to get in contact with. Be good & beautiful Thank you. |
| Name: | Terry Plank |
| E-mail address: | terrymp12@yahoo.com |
| Comments: | I have been doing some research on klinefelter syndrome and your page was very useful. Thank you |
| Name: | Donna Jones |
| E-mail address: | Ummi_8@yahoo.com |
| Comments: | Hi, it has been a long time since I visted the group, but I am in desperate need of helping my 20 year son find a doctor. I know that he needs treatment, but I do not know where to turn. All of the Endocrinologist that I have contacted in the Wilkes Barre, PA area seem not to have a clue on how to treat xxy men. Could someone please point me in the right direction. Thanks, Donna |
| Name: | Donna Jones |
| E-mail address: | Ummi_8@yahoo.com |
| Comments: | Hi, it has been a long time since I visted the group, but I am in desperate need of helping my 20 year son find a doctor. I know that he needs treatment, but I do not know where to turn. All of the Endocrinologist that I have contacted in the Wilkes Barre, PA area seem not to have a clue on how to treat xxy men. Could someone please point me in the right direction. Thanks, Donna |
| Name: | Lisa Metcalf |
| E-mail address: | knl030702@aol.com |
| Comments: | Hello, I have a 6 year old son with KS. i found out when i was pregnant. I hope i can help him to the fullest with any problems he might occur in his future. But i have a question When is the right time and age to tell my son of what he had? please if anyone can help me email me at knl030702@aol.com. Thank you and i wish you all the best of luck. Thanks Lisa |
| Name: | Lisa Metcalf |
| E-mail address: | knl030702@aol.com |
| Comments: | Hello, This is'nt my first time here. I have a 6 year old son with KS. I found out when i was pregnant of him. I hope i can help my son to the fullest with any problems he may occur in the futre. But i have one question to ask. At what age will it be the best time to explain to my son of what he has? if anyone can help please email me at knl030702@aol.com. Thank you and i wish you all the best of luck! Thanks, Lisa |
| Name: | charlie |
| E-mail address: | charlie-ayoub@hotmail.com |
| Comments: | what can i say? where should i start from? i can still remember my younger years, i was maybe about 4.5 years old. my aunty was watching television, she was sitting on this big coffee table right in front of the tv. i made sure she couldn't see me and i crawled under that big coffee table... she was watching a porno, i was sooo supprised. from that day on wood all i cared about was watching porn, having sex, etc. i found out that i have klinefelter sydrome at the age of 29 years old. i always had thought of myself as being a nympho-manic. at 30yrs i started injection. i still have a pretty sex life, other then the fact that my balls are shrinking and ive got friggen bitch tits. what can i say to that NOTHING. |
| Name: | amanda campbell |
| E-mail address: | a-jcampbell@hotmail.com |
| Comments: | MY 8 year old son has just been diagnosed with KS, it has taken so long for someone to put a name to why he is this way. To me he just a unique person. Would love to know more about this from other people in this situation. Thanks. |
| Name: | chris |
| E-mail address: | 24.10.07_@live.co.uk |
| Comments: | if you are diagnosed with klinefelter syndrome is a baby can anything change in your body to make you be able to have kids without any treatment..? if anyone knows plz be in touch via email |
| Name: | Jeff |
| E-mail address: | jeffww2@aol.com |
| Comments: | I was diagnosed with Klinefelter's before i was born, due to my mother's miscarriage it was found that the baby had a missing chromosome so when she was pregnant with me the doctors did a genitic test and i was diagnosed with it, thankfully, because a lot had happened that we knew was the cause of it, if it wasnt for that test when before i was born who knows where i would be today, it is sometimes really difficult to live with but most of the time i just forget i have it, just recently i tried to join the military something i wanted to do my whole life im 19 now, when i told them what i had nobody knew what it was they did research on it and when the results came back to me it hurt bad i was not aloud to join that is the hardest part of having this syndrome is letting a dream disappear before your eyes because of this disorder. I am currently on testostrone shots every 3 weeks and have been since i was 13 im trying very hard to find an answer to what would happen if i would stop taking it because if nothing major would happen i would be aloud to join the military i just cant seem to find the answer not even the endocronologist can tell me...if only there was a cure out there it would be a miracle to me...serving this country i love so much is my one and only dream i will ever have till the day i die...i wish you all best of luck you will come through some tough times but not everything you can blame on it but just know that living with this disorder doesnt mean your different from anyone else were all the same in this world! |
| Name: | Donna Ginn |
| E-mail address: | healingbrokenplaces@gmail.com |
| Homepage URL: | http://www.klinefelterssyndromexxy.com |
| Comments: | Your site is wonderful, educational and helpful Thank you for all you do |
| Name: | Paul |
| E-mail address: | pdwonder2003@yahoo.com |
| Comments: | Hello everyone,I'm 47xxy, and I would like to know if there are any support groups in Atlanta, Ga. Please send me an e-mail if there are any. Thanks. |
| Name: | Allen E Ensminger |
| E-mail address: | weld1972@comcast.net |
| Name: | Susan |
| E-mail address: | SOnofrio@dhmh.state.md.us |
| Comments: | I am a psychotherapist with a 15-year old client that has Klinefelter's Syndrome. His mom has not told him and I believe she should. I found this website and others looking for therapeutic interventions and ideas. |
| Name: | DANIELLE |
| E-mail address: | smallfry1977@comcast.net |
| Comments: | HELLO, MY 10YR OLD SON WAS JUST DIGINOSE WITH 47XYY SYNDROME. IT'S BEEN A ROUGH ROAD. VERY NEW AT THIS. ANYONE THAT HAS INFO PLEASE E-MAIL ME. THORNDIKE,MASS |
| Name: | ABA |
| E-mail address: | ABA@yahoo.com |
| Homepage URL: | http://www.ase.com |
| Comments: | I lopve the page sssooooooooooooooooo |
| Name: | Peter Majeau |
| E-mail address: | pmajeau@cox.net |
| Comments: | Recently we discovered that our 18 year son has klinefelter syn. Your story is textbook to our sons life. I am going to ask my son to read your story. I think it will help him understand and adapet to life with K/F. Thank You for shareing your story with our family. Peter Majeau |
| Name: | kieran |
| E-mail address: | kieran215@hotmail,com.au |
| Homepage URL: | http://klinefelters support group of vic |
| Comments: | if any body who has klinefelters who lives in melbourne or country victoria there is a support group conact me kieran215@hotmail.com for information thanks kieran |
| Name: | Donna |
| E-mail address: | ummi_8@yahoo.com |
| Comments: | Hi all, my son was diagnosed with kf when he was 13 years of age (he is now almost 20), and I must say that it was and still is a hard road for us both to travel. My son's behavior is sometimes so unbearable to the point that no one could stand to be around him for too long. My heart goes out to him, and I feel so guilty. Fore one, I am big on home schooling (I home schooled all of my 7 children with a great deal of success) and I tried to home school my son on my own as well. The doctor told me that I should put him in school so that he could get the help that he so desperately needed, but as always, I was afraid of the many negative elements that he was able to get into, so I tried to continue to home school him on my own. I guess I thought that I was protecting him, yet now I see that I may have only hindered him more. Now what? Well, I asked my other son if he would mention to his brother about the hormone shots that he could take that maybe able to improve his life. I guess the talk must have worked, because my son asked me how and where he could get the shots; he also said that he wants to go back to school. What a positive step in the right direction. I was so inwardly happy, but so scared at the same time; because I have no idea where to go from here. I just moved in the WB, Pa area, and I do not know where to look. I am so afraid, because this area is predominantly White American ( perhaps 94+%) and my son is an African American Male, who can barely read at the age of 20, and of course the stereo types of just being another lazy black man follows him; But just because he took the step to ask for the shots and that he wants to go back to school is showing me that he does not want to be just another statistic. He wants to help himself and I want to find help for him. So please, could someone tell me what I need to do to help my son. Thank You, Donna in Wilkes Barre, PA |
| Name: | Frances Garcia |
| E-mail address: | fggarcia3@hotmail.com |
| Comments: | Thank you for providing this information. I just learned that my 15 year old son has this syndrome. His symtoms appear to be mild according to what I have read. We live in La Marque, Texas. I wish you the best on your book. |
| Name: | Ben Parker |
| E-mail address: | leslennann@hotmail.com |
| Comments: | I just, I read your story and that's exactly how I've always felt, like whatever I did there was just something missing there, like if I tried to talk to people I would always end up having a completely disfunctional conversation and then end up hating myself over it. I don't know actually I might not have this syndrome but I have all the symptoms, I've got amazing long arm and legs, I've got enlarged breasts, I've been shy my whole life, everyone hates me because they think that I can help it, I try to do things like other people but I just am different. I'm just a kid, I need some help. |
| Name: | consuelo contreras |
| E-mail address: | csnl_ulloa@yahoo.com |
| Comments: | Excellent story, my husband have 47 xxy and is really similar to your fears and success. |
| Name: | Robert Fox |
| E-mail address: | ddfox@telus.net |
| Comments: | Hi stefan I have had klinefelters syndrome for all of my life i did'nt think their was anybody else that has this terrible disease. When i found out i had it at age 12 i am now 51 years old i find it hard to function normal and I could'nt figure why I would lose my temper at any thing.I lossed my job because of my temper and friendships I feel alone and depressed a lot. If I new of this website I would have been on It earlier.I have the 48 variation XXYY Yours Truly Robert Fox P.S I live IN CALGARY ALberta canada |
| Name: | xxx |
| E-mail address: | not having |
| Comments: | you are requested to remove the comments from your Dream book posted by me on Wednesday, November 27th 2002 - 09:08:33 PM. This is creating problem from me and my Email account is expired also. XXX |
| Name: | XXY |
| E-mail address: | not having |
| Comments: | Dear stefan, Kindly deleat the below mentioned comments from your Dreambook.Hope you will understand the reason and forgive me for putting you in trouble. sincerely yours XXY Name: Dr Rakesh Chibb E-mail address: rakeshchibb@yahoo.co.in Comments: Hi Stefan I have gone through your text it seems to be of mine. Me is 33 y.o XXY, i was discovered with KS in December 1991. And i started taking Sustanon "250" Testosterone in january 1991. Me is Geologist, did my Ph.D. on the geology of one of the most rugged terrain of Karakoram mountains just to overcome the disability. Presently I am a university lecturer in India and my students loves me like any thing because I am beeing considered by thm to be their best teacher. Presently I am unmarried and looking for a write person with very high compatibility rate. Thanks to educate the XXY persons, relatives and to society. Feel free to contact. Wednesday, November 27th 2002 - 09:08:33 PM |
| Name: | Rob B. |
| E-mail address: | bootstomper@hotmail.com |
| Comments: | Hi all in XXY land. Rob from OZ , i found out at 42 and now 48 ....yes it was a shock ut i live with it, but to not have children of my own yes i hurts. My upbringing was hard with a dad who knew i wasnt right and made sure that i would stay that way, i got on with life okay but couldnt work out why i couldnt read or write at 12, well now i know. I did well later in life okay i am not a Uni grad but i do have a good trade and i do love women more than anything and most of my female friends are just that FRIENDS, but i do have relationships with them. As for being gay no its not what i want i know SAME SEX is part of me but i know what i want.okay i have had my fun finding out. so you Beautifull people if ya wanna email me go for it i would like to meet some of you if your down my way, I COME FROM A LAND DOWN UNDER. ROB B.. |
| Name: | pauline hodgkins |
| E-mail address: | tazzim@live.co.uk |
| Comments: | This site is brilliant. I have a 5 year old son with KS. Anything else I need to know please e-mail me. Any groups in the Crawley area please let me know |
| Name: | Pauline Hodgkins |
| E-mail address: | tazzim@live.co.uk |
| Comments: | My four year old has been dignosed with KS. Its great to hear other stories. Need more information ,very new to this. Please e-mail me |
| Name: | Claire Kelly |
| E-mail address: | claireannkelly@gmail.com |
| Comments: | Thank you so much to Stefan and to all who have commented here for sharing your story & experiences. My brother has KS, is now 26, and very very unfortunately due to what my parents feel is the best for him, they have not yet advised him of the diagnoss they received for him when he was a boy. Clearly, had they the information and benefit of sharing in the experiences of those of you here - they might have chosen action in place of ignorance. I hope that in the near future, my wonderful brother will have the benefit of knowing about KS and understanding himself and feelings like never before & getting the treatment that will assist in his life development. Thank you all and God bless. xx |
| Name: | Bn Terblanche |
| E-mail address: | barendh@yahoo.com |
| Comments: | Hi ks friends,well what can i say,i have been known from the adge of 23 years old that i have ks,i am now 51,and keep going strong,i used shots for 21 years and stop for 3 years now and feeling good,well my friends i will be leaving darfur in 3 days,and go back to south africa after spend 8 mnths away from my wife,keep well,anybody from south africa with ks,please let me know,believed in God,keep well ben in sudan.GOD BLESS YOU ALL WITH KS> |
| Name: | Bn Terblanche |
| E-mail address: | barendh@yahoo.com |
| Comments: | Hi ks friends,well what can i say,i have been known from the adge of 23 years old that i have ks,i am now 51,and keep going strong,i used shots for 21 years and stop for 3 years now and feeling good,well my friends i will be leaving darfur in 3 days,and go back to south africa after spend 8 mnths away from my wife,keep well,anybody from south africa with ks,please let me know,believed in God,keep well ben in sudan.GOD BLESS YOU ALL WITH KS> |
| Name: | Dan |
| E-mail address: | ddhightower@sbcgolbal.net |
| Comments: | Thanks for all your infomation about KS on you web site. I have just bout all the symptoms. I just found out from my doc today that i have KS. other than taking hormone pills, patches, or injections is there any other treatment. Please write me back and let me know. Thanks. |
| Name: | Pete Becker |
| E-mail address: | pjbatl3@yahoo.com |
| Comments: | Hi Stefan, Thanks for your story. It's a lot like mine, except I found out at 19 that I had Klinefelters, but the doctors failed to give me HRT because my serum levels were right at the minimal mark. Only later at 44, did a new set of doctors recognize how much I needed HRT and started me on it. Quite an eye opener. It felt like going from living in twilight to living under the noon day sun. Now I am married, living in Atlanta GA in a blended family situation. I found you because it is so hard to get "normal" people to understand my learning challenges. Even with two Bachelor degrees, I still have difficulty with ADHD symptoms that others blame on other stuff, but I have compensated and made due. Is there an email address I can correspond to? |
| Name: | tim |
| E-mail address: | timberkan@gmail.com |
| Comments: | I have it also and im 21 or atleast i think i have it. I wish i had the courage like you had |
| Name: | Leisa |
| E-mail address: | leisa@ozzienet.net |
| Comments: | I am the Mother of a 10 yo son with KS. We have had our fair share of ups and downs! I would like to find others living with KS in South Australia. Please write soon. |
| Name: | Michael |
| E-mail address: | rewind2grace@aol.com |
| Homepage URL: | http://www.myspace.com/italysfinestman |
| Comments: | I just read your story and it was like reading the story of my life to a T. I called the 1800 number and left my information. On a good note I was accepted into Bible college today and now just need to find the funding although I did receive an 80% scholarship. Being on disability the other $600 is hard to come by. Anyways God Bless you my friend and keep up the great work!! |
| Name: | Tanya |
| E-mail address: | titsubun@hotmail.com |
| Comments: | Hello there, last year my husband was diagnossed with KS and it was quiet devistating concidering we were trying to have children. My husband has yet to have a biopsy done and i was wondering if there was anyone out there with a success story to help us thru this... or even any suggestions. I look forward to hearing from you. |
| Name: | Peter |
| E-mail address: | Jedainight@hotmail.com |
| Comments: | I'm doing a biology paper and its surprisingly difficult to find out about the necessary intricacies of its diagnosis. |
| Name: | Crystal |
| E-mail address: | mrsfassitt@yahoo.com |
| Comments: | I am a mother with two year son who has Klinefelter Syndrome. I just want to get as much info as possible. |
| Name: | Stacy |
| E-mail address: | engels07@bellsouth.net |
| Comments: | My son has KS. He was diagnosed when he was 3 1/2yrs old. He will be 7yrs in May. He is a wonderful child, but is starting to have behavior problems. He is the pickiest eater in the world! If anyone would like to talk drop me a line feel free. I am soooo excited to see there are other people out there w/ similar situations. I would to chat w/any of you. Hang in there y'all! We have to stay positive for these wonderful boys and men. I thank God every day for my son. I would love to compare notes with some of you and who knows we could possibly create a fabulously positive support systems for the good and bad of this disorder. Hope to hear from y'all! |
| Name: | Robert |
| E-mail address: | robert.wells50@yahoo.com.au |
| Comments: | Hello, I was diagnosed with KS47 at 17y.o. I am now 49. Just found the dream book and I am excited about talking to some of you, I reside in South Australia. and next time I would like to tell you my story. I'll just say this, I hate the fact that I was born with this dreaded syndrome! Rob. E-mail-robert.wells50@yahoo.com.au THANKYOU! |
| Name: | Deb |
| Comments: | Discovered your website from an A&P textbook I'm studying for medical coding. You're an amazing man as are all the people who have signed your dreambook. Thank you for sharing your story, for educating and for supporting. I look forward to your next update. |
| Name: | LISA METCALF |
| E-mail address: | KNL030702@AOL.COM |
| Comments: | HELLO EVERYONE, I FOUND OUT THROUGH A AMNIO THAT MY SON HAS KS. ME AND MY HUSBAND WERE DEVASTATED. WE HAD NEVER HEARD OF THIS AND DIDNT KNOW WHAT TO EXPECT. I CRIED BASICALLY THE REST OF MY PREGNANCY TILL I HAD HIM AND IT ALL WENT AWAY. IT WAS LIKE GOD SENT ME A ANGEL FROM HEAVEN. HE COULDNT BE MORE PERFECT IN MY EYES. HE WAS A HEALTHY HAPPY BABY BOY. HE HAD NO PROBLEMS UP UNTIL NOW. HE IS 5 YEARS OLD AND IN KINDERGARTEN AND HAS BEEN HAVING PROBLEMS WITH BEHAVIOR AND SPEECH, ETC. SO WE ARE HAVING A WHOLE EVALUATION DONE RIGHT NOW. TO HAVE HIM PLACED IN A SMALLER CLASSROOM WITH MORE TEACHERS,SO HE CAN GET THE HELP HE NEEDS. I READ SOME OF THE LETTERS FROM KS MEN AND MY HEAT BREAKS FOR YOU ALL, I JUST HOPE MY SON GETS THROUGH THIS. MY HEART BREAKS FOR HIM. WE WILL DO ANYTHING AND EVERYTHING WE CAN TO GIVE HIM THE BEST OF HELP OR TREATMENTS HE NEEDS. I WOULD REALLY LIKE TO SPEAK TO ANY OTHER PARENTS OUT THERE WITH SIMILIAR PROBLEMS. I REALLY CAN USE SOME ADVISE. I TEND TO LOSE PATIENTS WITH HIM SOMETIMES AND THEN I RELIZE ITS NOT HIS FAULT. AND I BEAKDOWN. SO PLEASE CONTACT ME IF YOU UNDERSTAND WHAT IM GOING THROUGH. MY NAME IS LISA AND MY EMIAL ADRESS IS KNL030702@AOL.COM. THANK YOU AND GODBLESS |
| Name: | John Buban |
| E-mail address: | johnbuban@aol.com |
| Comments: | HI Stephan, Happy new yr to you and your family, I had the honor of meetting you a couple of yrs agao in Allentown , Pa I at that time was engaged but did not marry, long story, so how are you? Iam ok but at my full time job at the veterans affairs medical cenet in Wilkes-barre,Pa my new boss was giving me a hard time, so I had to go to employee relation's for help, this is the first time they had to deal with this syndrome, if you have any advise I would greatly appreciate it thanks your friend JOhn Buban |
| Name: | nathan gehl |
| E-mail address: | nathan_gehl_@hotmail .com |
| Comments: | i'm 34 have klinefelters but i currently dont take any treatments could you send me some info on the types of treatments that are currently out there |
| Name: | John |
| E-mail address: | jca1492@insightbb.com |
| Homepage URL: | http://google.com |
| Comments: | I am 53. I was diagnosed with KS when I was sixteen. I was given a battery of tests at Harvard Medical School in Boston. Then they did a biopsy of my testicles without telling me why. I finally conned a psychiatrist into telling me what they had found when I was seventeen. I didn't start HRT until I was 34. I always worried about "not being a man". So much was out of place that I turned to drugs and alcohol. I have been sober for 19 yrs in AA. I would be glad to talk to anyone about KS. I live in Louisville, KY. Thanks for the great site, John |
| Name: | drew |
| E-mail address: | craze18_2001@yahoo.com |
| Comments: | I was diag. in 2001 through the naval balboa hosipital. i was trying to get in the navy and the doctor at meps told me i was declined for service. They told me i wouldnt make it thorugh boot camp. but anyways besides all that thanks 4 the site. San diego, CA |
| Name: | Joe Wenrich |
| E-mail address: | WenrichJLW@aol.com |
| Name: | Kamran |
| E-mail address: | kamyab512@yahoo.com |
| Comments: | I wish to talk to you, to know how can I help myself. |
| Name: | michael wells |
| E-mail address: | cavershamman@hotmail.com |
| Comments: | hi i read some your story,i found out at 15yrs old i had klinefelters,im 40yrs old now,im looking to find other people with same problem to chat to,hope you had a nice xmas and happy new year :-) |
| Name: | jeremy taylor |
| E-mail address: | brhbrh2oo3@email.com |
| Homepage URL: | http://beep.com/members/ministryofdreams/ |
| Comments: | thanks, danke, |
| Name: | Scott Foster |
| E-mail address: | downwithvengence81@msn.com |
| Homepage URL: | http://www.myspace.com/seriousblack81 |
| Comments: | I read your site a few years back as i have been doing countless research into klinefelters, i was diagnosed with the condition when i was 12yrs old but due to my problems growing up i have come here to seek help and maybe some guidance... |
| Name: | Garrett |
| E-mail address: | hawk_777374@hotmail.com |
| Comments: | Hey, I have Klinefelter Syndrome and I was wondering if there was any support groups in Toronto, Canada if there is contact me and one other question I am being told that because I have Klinefelter Syndrome it causes Mental Illness and yet all of the web sites on this rare genitic disorder that I have doesn't say one thing about Klinefelter Syndrome causeing a mental illness. |
| Name: | Garrett |
| E-mail address: | hawk_777374@hotmail.com |
| Name: | PP |
| E-mail address: | starygav@hotmail.com |
| Homepage URL: | http://www.gavancoleman.com |
| Comments: | on may 31st 2006 i wrote please go to xxytalk.com...now on todays date i re-discover what iwrote and i continue to say that xxytalk is the best place to go so far for xxy related issues and the all shocking intersex points too... yet i regret to ask you to get that they wont let me peaceandparty who some of you have met back on! because they have backed off from supporting me and even with my experiment off t where am i meant to be? alone? chewing off scraps of meat till i am raw to the bone? if you all have ears then you will see the light from my fears that support must be universal will i even do another verse at all? because a poem like this you could give a miss but ignorance can no longer be bliss its peaceandpartys story and xxytalk has become gory hiding the fact that i am banned does anyone have the decency to hold my hand? and lead me through the door and give me my own key so i dont have to be a weasel anymore who said rudeness was free? why cant we all live and let be?!? its up to all of us to a degree how do you think it would feel to be me???? banned with no helping hand just cuz i am me! heeheehee |
| Name: | Melissa |
| E-mail address: | melissa3685@yahoo.com |
| Comments: | I just recently found out my son has Klinefelter/XXY Syndrome. He is 3 years old. It has been tough up until now. Now I know what he has and why he is the way he is. I attend NA almost every day because of some choises I made in my past. I will pick up my 4 years on December 19, 2007. My NA group have been my support through learning all of this about my son. One of the members gave me this poem that was gave to her mother for her disabled sister. It has helped me deal with some of my selfish feelings. HEAVEN'S VERY SPECIAL CHILD A meeting was held quite far from earth. It's time again for another birth, Said the angels to the Lord above, This special child will need much love. His progress may seem very slow. Accomplishments he may not show. And he'll require extra care, From the folks he meets way down there. He may not run or laugh or play, His thoughts may seem quite far away. In many ways he won't adapt and he'll be known as handicapped. So let's be careful where he's sent. We want his life to be content. Please Lord, find me parents who will do a special job for you. They will not realize right away The leading role they're asked to play. But with this child sent from above Come stronger faith and richer love. And soon they'll know the privilege given, In caring for this gift from Heaven. Their precious charge, so meek and mild, Is Heaven's Very Special Child. I hope this poem might help someone else that is dealing with a child that is truely a gift from Heaven. I hope that no one will choose to abort a child with this disorder. I can't see my life without my son. My husband also has to take hormone replacement. He is not the biological father of any of my 3 kids. He also can not have kids of his own. He also married an instant family. He wouldn't have it any other way. Love,Love,Love Melissa & Family |
| Name: | Abby and Sydney |
| E-mail address: | abby.cuteblondie@gmail.com |
| Comments: | Hi we are Abby and Sydney and we are doing some reasherch on Klinefelters syndrome for a school project. This is such a good website. Thanks Abby and Sydney |
| Name: | Lori |
| E-mail address: | tabbie24@hotmail.com |
| Comments: | Hello, I was reading your site. I am a nursing student and I am doing research on the syndrome for my assignment. I did not even know the syndrome existed untill my instructor gave me it for my assignment. If any one can give me some input I would love to hear from you. Or if anyone just needs somone to talk to or a friend I am there also. Thank You. |
| Name: | Renan |
| E-mail address: | eternal_renan@hotmail.com |
| Comments: | I'm really happy because I found your site. Really, in your words I' found that I wanted since I discoreved the SK in my life (and this is a new and very hard notice in my life...) Thank You! (muito obrigado) (sorry,my english is very poor, my speciallity is the portuguese -I'm a brazilian) |
| Name: | sue long |
| E-mail address: | karaoke_sue@hotmail.com |
| Comments: | hi , i came on here today as my boyfriend suffers with this too he is so depressed as he cant find a support group in our area of greater manchester if anyone has any addresses for us i would be so gratefull thks sue |
| Name: | Michelle |
| E-mail address: | d.parent@maine.edu |
| Comments: | Thank you for your testimony! I am doing a project on KS in university and found your whole story inspirational. I have read it twice and admire your courage and commitment to help others. Keep up the great work! |
| Name: | Jimmy |
| E-mail address: | bluemanbruin@hotmail.com |
| Comments: | I have k.s. and recently started experiencing new things. Could you send me some info, Thanks |
| Name: | Krysten Drinkwater |
| E-mail address: | strawberryxwaltz@aol.com |
| Comments: | I do not have KS, but I am doing a genetics project where we have to figure out which disease our "child" has by looking at the chromosomes and making a karyotype, and my syndrome is Klinefelter Syndrome. So, if any of you wish to email me to tell me your experience with it, it would be greatly appreciated! Best of luck! |
| Name: | Celestino Paul Diaz |
| E-mail address: | celestinodaa@yahoo.com |
| Comments: | Hello, I'm 49 years old and xxy, My wife (if you recall her name as Kricket) had spoken to you quite a few years back. She was wondering if your web page was still up and running and apparently it is. I thought I should see if there were any more treatments on some of the existing web pages out there, only started this past week. I'll let her know about you today. I'm taking classes at the junior college here in Trinidad (Graphic Design) and I wrote out an introduction speech for my public speaking class based on my experinces with klinefelter's. I thought I would make it into a speech before classes even started and I can't wait to stand up there at the podium and speak it. There are only four people who will be hearing it, but that is fine with me. Like yourself, I've been wanting to say things of what has bothered me for years. I'm going to give it my best shot. sincerely , C. Paul Diaz |
| Name: | Dana Chojecki |
| E-mail address: | JChojecki@nycap.rr.com |
| Comments: | My son Jayden has Klinefelters. He is 5 years old. If possibe I would love to speak with anyone that is in the same boatin regards to his behavior. I would like to know that there is a light at the end of all of this. I worship my son and I want to find the best for him. Please email me. |
| Name: | Mike Barker |
| E-mail address: | mike@studiotrans.com |
| Comments: | Lots of good info |
| Name: | Jack Russell |
| E-mail address: | johnh254@aol.com |
| Comments: | I sit here at my desk with my 1cc Hypo ready to go. I was diagnosed in1984 I think, I will be 40 next year. I have inly met one other individual who is KS. I am 47 XXY, possibly mosiac, I do not really remember, it is not really important. We found a really great doner for our daughter, and she is healthy and well. I managed to fail Spanish, German and Latin, Physics, Chemistry, and Algebra, not in that order, before anyone was able to conclusively prove that I had a learning disability, and this was incollege after I had already earned an Associates Degree in Rural Resource Management. The Boston area club did not have any update info since this spring, and I would like to meet some other KS'ers, especially if they like to play paintball, although that is not neccesary. |
| Name: | Doug |
| E-mail address: | canicallustupid@aol.com |
| Comments: | My name is Doug yes I signed this before but after reading more about KS... here is something that should blow everybodys mind, there are 3 men in my family that have KS!!! YES 3! Myself, my FATHER, and my younger brother!! 1 in 750 to 1000 live births can have this, most KS men won't father children, 95-99% it can happen... yes my father was diagnosed as a child as XXY, I have not been diagnosed as of yet... 3 in one family seems impossible! Any other ideas what it could be please drop me a line! P.S. I'm 35 so my father was diagnosed in the mid 1950's |
| Name: | whitney |
| E-mail address: | whitney_4@hotmail.com |
| Comments: | Wow, I cant believe how interesting and helpful your website is. I am dating a man with KS. He is going to be 27 in a couple weeks. I love him to death and we were together for over a year before he was diagnosed with KS. He is just like any other guy. He has a successful career in construction, he is handsome and very sweet. It was a bit of a shock when we first found out about his genetic defect but it wasnt hard to realize that it didnt matter and it didnt change the person he is. He was previously married and when he went for fertility tests, they told him he had no sperm count. Well, needless to say, his marrage fell apart and then a little while later, he met me. Now, I know I want children eventually (I am only 21), but I also realize that we have other options. And when the time comes, we will discuss these options furter. Anyways, after he met me, he followed through with more doctors appointments and was then diagnosed with KS. I cant say that he has too many of the symptoms of KS, however he does have smaller testes and not a lot of facial hair but he has a fairly high sex drive and a normal sized penis. He is wonderful because he doesnt dwell on the fact that he has it. I can honestly say that knowing hasnt changed who he is and hasnt affected our relationship. I am still fairly uneducated but I want to know more about KS. feel free to e-mail me with any comments or questions |
| Name: | Madeline Perry |
| E-mail address: | mmp18@students.uwf.edu |
| Comments: | Hi Stephan, I dont think i ever said thank you to you for saving my brothers life. My brother was diagnose with KS before he was born, and my mom was debating on wether to have him or not, she talked to back in 1999, and you explain to her that is ok to have KS, and that he will be able to live a normal life. She listen to you and she had Donnie Jefrey Stephan Perry, my little brother that is now 7. He is still little so i he hasnt gone threw all the changes yet. He has trouble paying attention in school, but so does every 7 year old. I love him to death, i already look up to him even though he is a lot younger then me, i am 21. I am actually studying Pre-Med , and he inspires me in working hard, and to help him and other people with KS, to find a way to have children ( i want to be a genetics doctor). It breaks my heart to know that he wont have children of his own, my parents and my twin sis and I dont plan on telling him what he has untill he is a little older. I am greatfull to God that i have him as a brother he is the highlight of my family and my life. Thank you again, for talking to my mom, 7yrs ago and making her realie that normal life is possible. God Bless you all, and dont give up, everything is achievable. |
| Name: | Doug |
| E-mail address: | canicallustupid@aol.com |
| Comments: | My name is Doug, and I recently found the name for the "diorder" that I have, KS! I have not been formally diagnosed with it but all of the symptoms are there, if you read more about the "disorder" you will see alot of the these things, depression, a type of autoimmune difecieny (sp), (I have a great one EPSTEIN-BARR), among others. I looked up and tried to figure out if it was me that was causing my wife (2nd one) and I not to concieve, (1st wife couldn't either) guess what... sperm count is low, not 0 but possibly low enough to cause us not to concieve, and/or go to term. So with that thanks for reading this if you do... pelase "throw down a prayer" for my wife and I all I really want is for her and I to have a child... thans again... D. |
| Name: | Barb |
| E-mail address: | luggalot@telus.net |
| Comments: | My son has K.S. and I need to help him. He's 35 and is in jail four the next 4 years. His life has been very sad and he's very mixed up. I want to tell his story. Thanx. Barb. Mom of an XXtra special boy. |
| Name: | Garrett Morgan |
| E-mail address: | garrettmorgan24@hotmail.com |
| Comments: | Hi my Name is Garrett Morgan and i live in spokane W.A....well when i was about 10 or 11 my mom was telling me that i had Klinefelter Syndrome and at frist i did not know what that was so it was hard for me to know at that age....well know i am 17 years old and now i know what it is and waht it does to your body....that is cool what you have done to put this on the internet....well if you have any thing to ask me you can email me @ garrettmorgan24@hotmail.com or you can call me at 1-(509)891-5033.... thanks Garrett Morgan |
| Name: | James |
| E-mail address: | myxxwhy@gmail.com |
| Homepage URL: | http://www.xxwhy.com |
| Comments: | I have found an amazing story in the Australian news , "Human sperm cells artificially created for first time" , the full story can be found on my Australian Support site for Klinefelters Syndrome. Stefan , thankyou for creating this site , your an inspiration to us all. Regards James founder xxwhy.com |
| Name: | Kser |
| E-mail address: | kser28@rediffmail.com |
| Homepage URL: | http:// |
| Comments: | Hey u all KS people! Why is everybody so depressed with this disorder! You can do everything that others can do except fathering a child. But then there are hundreds of thousands of couples in this world who are unable to concieve for one reason or the other. You can enjoy sex as every other man. Your condition is better than that of the people suffering from various deadly diseases such as cancer, AIDS etc. So please think, behave and work like normal people. There are a number of successful people with KS in this world. So cheer up and get back to your work. I think anybody who is not under constant physical pain, who is free, who can feel and enjoy the gifts of nature such as cool breeze, rain etc and who can see this beautiful world is a lucky human being. |
| Name: | leon john |
| E-mail address: | hixxyforlife@yahoo.co.uk |
| Comments: | i got dianosed with ks when i was 11 im now 17 and there r sum strange thins happening to me |
| Name: | Karen |
| E-mail address: | smith71@charter.net |
| Comments: | Thank you for being there when I was looking for piece of mind. |
| Name: | mark zimmerman |
| E-mail address: | worldbank1@aol.com |
| Homepage URL: | http://www.myspace.com/worldbank1 |
| Comments: | hi there i have klinefelter's syndrome i found out about 15 years ago i am 25 right now going to be 26 in august. i am trying to start a support group on long island for people with klinefelter's syndrome. i am asking you to past it along to as many people as u can i am mark and i am from hewlett on long island ny, please e-mail me at worldbank1@aol.com if u have any questions please thank you for the time |
| Name: | Tara Roach-Fleming |
| E-mail address: | livnme@optonline.net |
| Name: | ken johnson |
| E-mail address: | carpmeister001@aol.com |
| Comments: | I found your story very interesting. I am a uk based Support Worker, working with adults with 'LD' One of my service users is diagnosed KS, and is finding it very difficult to establish an identity or worthwhile role in life, so much so that I feel he has wrongly accepted for good that he will never be of any worth, and rejects all attempts to drag him out of this rut.My hat off to you sir for overcoming all the prejudice and sterotyping you have had to endure. Kind Regards Ken |
| Name: | Amy |
| E-mail address: | sexyamy81@yahoo.com |
| Comments: | Hello. I have a son that is very close to having KS. (It's a long story). Anyway I would just like to say thank you to everyone for the dreambook. I think it is a great thing. I just hope for my son to have a good future. Thank you for reading. |
| Name: | Denture |
| E-mail address: | denturemint@yahoo.com |
| Comments: | I'm happy for you stefan....I'm happy for anyone who finds success with obstacles. I just wish there was hope for me. I'm 33 and was diagnosed with KS at 13. I was put on HRT for life but took myself off at the age of 21 because I became more confused about my gender identity. My doctors won't do anything for me now since my testosterone has normalized on it's on though my estrogen/estradiol levels are highly elevated. I'm very angry with the results, because I wasn't sick and was "masculinized" because of medical standards. I was a straight "A" student, wasn't shy and was energetic before the shots. Do you want to know why I was taken to the doctor?? Because I acted and looked too feminine. They put me on the shots to masculinize me and I still act and look feminine just with some body hair. HRT isn't for everyone. It ruined my life. People call me ma'am, people call me sir. I don't even know what I am anymore so I just identify as intersexed. But again I am happy for my XXY brothers that have success with this disorder. |
| Name: | james |
| E-mail address: | james@xxwhy.com |
| Homepage URL: | http://www.xxwhy.com |
| Comments: | Hello Everyone... My name is James, im turning 34 in just under a week , i found out i had Klinefelters Syndrome when I was 30 , so many years ago , so much had happend. When I discovered my KS, I was happily married , I had a future and was in love with my soulmate , everything was perfect. I had everything before the result came through. I found out first hand that everything changes in a test result.I changed.We both changed. I dont think I will ever be the same person I was prior to the test results. My wife and I were trying for kids, I had the test, it came back ZERO!!! - nothing... At the time I was confused, over time I became angry and then sad , then my marriage ended. Words cannot even start to explain how I felt and when im down (as i write this) how I feel, very very sad... This will be my first birthday since I diagnosed with Klinefelters Syndrome as a divorced man. This was not what I planned when I asked my ex wife to marry me. Not part of the master plan. I know life could be worse , to the outside world I look and act fine, to myself its a new world , its a place where I im always asking why.... why me... its not fair.. but you know what? It could be worse. Im alive, I breath, I wake up and I fall asleep. This dreambook and Stefan has helped me so much. I even started my own website, talking to other guys who have KS has saved me from myself. Its saved me from doing something very stupid when I was very sad and very angry. Thankyou for listening. Im sure I'll wake up tomorrow and life will be fine. Waking up is the first step... after that everything is a bonus. james. |
| Name: | Jamie Lockridge |
| E-mail address: | miamiflorida@mafiaworld.com |
| Homepage URL: | http://jamielockridge.com |
| Comments: | I love your website keep it up true class show's. I will miss Misty Nicole Daigle "GONE BUT NOT FORGOTTEN" |
| Name: | Larry Starr |
| E-mail address: | lstarr7@cox.net |
| Comments: | Stefan, your story is phenomenal. I read all of it and you write as though you are "talking", its very easy to read, it felt like you were sitting in an adjacent arm chair conducting your part of a "conversation." Your book is going to be great. |
| Name: | James |
| E-mail address: | jamesdiamond@btconnect.com |
| Comments: | Stefan thanks for setting up this site it’s a big help. Hello everyone.. I’m James and 27 years old but when I was 13 I was very small for my age that made my doctor think was there something wrong with me or was it just one of those things but after two years of check-ups and tests of all kinds the only think that they could find was that yes I was small for my age. But it didn’t end there I can remember going for some results and the doctor saying to me that there was a chance that I could never have children of my own. Which in a didn’t bother me as I was so young, right away I was put on tablets that yes helped me to grow but on the other hand made me very sleepy and gave me a lot of headache’s along with mood swings. So then at the age of 17 I quit the tablets that made me and life as better. But then up until 3 years ago I met this girl Sarah who lived in West Sussex even though I live in Cornwall I would travel to see here when ever I could and she would come and stay with me when it was possible with here. Because she was my real first serious long term girlfriend it seemed only fare to tell her that there was a chance that if it came to us getting married in the future that I could maybe not have children of my own. Then in the third year of us been together I wanted to know the whole truth could I have a family Sarah had always said that it didn’t matter to her if I could or not there was always another way around the problem. I then had the tests and in the mean time of waiting for the results we went skiing together with her parents and was due the results the day after I got back from our holiday. That’s when I felt my world fall apart results were in and I was told that I had Klinefelter’s syndrome I was XXY. It was very hard to speak about my feeling that I was feeling and to top things off Sarah said I’m sorry but I really won’t children of her own and left me. After she left that was it I wanted to end my life but I have loving family and I have the future to look forwards to but even now if I’m out driving or any where and I see a couple with a baby or children I always think how lucky they are. I have just been told that my testosterone levels are low and I need to think about having injections every month or tablets or even Androgel can anyone help me and tell me more about ANDROGEL how do you find it? Thanks for reading this it’s the first time I have really spoken about it. If anyone wont’s to chat please feel free to email me. Take Care Everyone.. |
| Name: | mel |
| E-mail address: | mel_luvs_30_seconds_2_mars@hotmail.com |
| Comments: | i read so much of these stories and it ahs really opened my eyes to see how this disease effects so many people. This sight has really helped me with my bio assignment. Thanks to everyone who posted their stories, they are truely inspirational |
| Name: | ben terblanche |
| E-mail address: | benindarfur@yahoo.com |
| Comments: | well here i am,i been having ks from 1957,i am 50 years old andlive in south africa (ladysmith kwa zulu natal), the problem i have,i would like to know if their is any body in south africa with ks,i do go through life with a lot of problems,but my wife understand,so men and woman keep our hands together ,and leave it in Gods hand,we are here for a reason,i am working for the South african new defence force (army )for the last 25 years.BLESS YOU ALL>Ben in darfur(kutum base)peace force |
| Name: | ben terblanche |
| E-mail address: | benindarfur@yahoo.com |
| Comments: | well here i am,i been having ks from 1957,i am 50 years old andlive in south africa (ladysmith kwa zulu natal), the problem i have,i would like to know if their is any body in south africa with ks,i do go through life with a lot of problems,but my wife understand,so men and woman keep our hands together ,and leave it in Gods hand,we are here for a reason,i am working for the South african new defence force (army )for the last 25 years.BLESS YOU ALL>Ben in darfur(kutum base)peace force |
| Name: | Kristena |
| E-mail address: | ck4lw4y5@gmail.com |
| Comments: | I am doing a research paper on Klinefelter Syndrome for my biology class. Your story is amazing and a great help. Thank you. |
| Name: | Middle School Person |
| Comments: | Thanks!!! This helped me with my project on it for school! |
| Name: | Char |
| E-mail address: | Char_hhhh@yahoo.com |
| Comments: | Just wanted to say how much I enjoyed reading Stefan's webisite. Thank you so much for sharing. Sincerely, Char |
| Name: | Antonio (Australia) |
| E-mail address: | antoniobianchi76@primusonline.com.au |
| Comments: | Hey there just read dreambook think its great I live in Sydney and have Klinefelter syndrome but find that when iam on the treatment i get more tired than when i started the day with im very physical i do yoga every 2 days i goto the gym and i have my own fashion label which rules my life at the moment. email me someone can chat |
| Name: | Saeed Al-Tala |
| E-mail address: | seeed99@yahoo.com |
| Comments: | Dear freind I have realy enjouid your live story very much thanks for shairing your life experience with us Saeed |
| Name: | curt and karen |
| E-mail address: | cl2green@netscape.ca |
| Comments: | We came across this site while looking for more information on KS.We have read a lot of responses to your story but don't know your story or how to get it.Would you share it with us? Our son was diagnosed with KS while I was pregnant.He is now 9 years old.He is a wonderful child. He grew up being very shy and is overcoming that. He struggles in school and is well below grade 4 standards. We haven't told him yet about his syndrome but he is just now asking questions about his testicles. Do you have any suggestions on how we could discuss this with him? Thank you,Karen |
| Name: | Vinton High School |
| Name: | Jessica |
| E-mail address: | ruff12694@comcast.net |
| Homepage URL: | http://youtube.com/hotpenguins |
| Comments: | Thanks for putting this about yourself. I'm a middle school student and I need to do a project on this disease. This helps a lot. Thanks again. |
| Name: | Stephen |
| E-mail address: | errastar@msn.com |
| Comments: | Your story is very inspiring. Thank you! |
| Name: | Dan Erickson |
| E-mail address: | deric169@centurytel.net |
| Comments: | Just a quick note: Blue Cross-Blue Shield will not pay for Androgel - which is the best, but they do pay for Testim. I take Testim Gel 1% 50mg ( 5 g tube ) once daily and my CO-PAY with Blue Cross is $50 per month. Just thought somebody mite need to know. |
| Name: | Dan Erickson |
| E-mail address: | deric169@centurytel.net |
| Comments: | I read your story and I can relate to many parts of it. I am very impressed that you have succeeded in life, rather then letting KS control your life. I took 200mg by inj. every 3 weeks for about 17 years but the up and down mood swings and the depression became to great. Now after finding a doctor that would listen to my desperation I have been on the Gel ( taken once daily )for 3 years and "Life is just amazing" so much better! I just got back on line and haven't really figured out how to access my centurytel email yet, but I'm also on aol. As: DSX650@aol.com Thanks for posting your story for others to read. |
| Name: | joe |
| E-mail address: | dunham_joe@yahoo.com |
| Comments: | I have been looking for men with small penis or micropenis to relate with. It is a lonley felling knowing you are handycaped with no means for help |
| Name: | Jason |
| E-mail address: | jnotafarb@sbcglobal.net |
| Comments: | I feel alot better seeing that there are many others out there that feel and understand what I feel. I thought I was alone in the world. Not knowing where to turn. |
| Name: | Kali |
| E-mail address: | moabkiki@yahoo.com |
| Comments: | I run across this site while researching Klinefeler Syndrome. I'm in 8th grade and I just wanted to thank you for so much info. I got an A because of it. I'm very touched of your story. Kali |
| Name: | Gina |
| E-mail address: | water_admiral@hotmail.com |
| Comments: | Stefan, From what I have read, you are truly amazing. I love success stories, and your's made me happy to read. I came across your site while researching genetic diseases for my AP Biology course so I could give a presentation to the class; Klinefelter's syndrome was on the list. So, while gathering websites for my project, I clicked on yours. The best of luck to you and your family! |
| Name: | Chane B |
| E-mail address: | www.chaneblack@yahoo.com |
| Comments: | Way to live through the problem keep it up!!!! |
| Name: | Dezirae Oviedo |
| E-mail address: | azokcrack@yahoo.com |
| Comments: | I think your story is wonderful...what you've accomplished is wonderful. It is so awesome that you are trying to raise awareness for KS. I have a friend with this syndrome and I love him to death!!! He's so kind and caring and funny! Thank you for everything |
| Name: | Rachel Smith |
| E-mail address: | rachelsmiths1234@yahoo.com |
| Comments: | I'm glad to read about what you've achieved in life after all I've been reading on the internet about Klinefelter's. I just found out my child has a mosaic form after an amniocentesis was done and the information you have put on the website will help me immensely in making plans. Wednesday, October 18, 2006. |
| Name: | Todd |
| E-mail address: | sunnyskies2dy@yahoo.com |
| Comments: | I have Klinefelters Syndrome with may other cronic and phisical problems. If any one wants to know new information or all that could happen as a resault of KS please email me and I will be happy to tell you more . Thanks Dreamhost for this site.If you are a parent with a small child with Klinefelters Syndrome please...please get there Testosterone levels checked Normal levels are between 300-1000 count. If low get them started on Androgel as soon as possible. This is very important. Will help them more then you may ever know. |
| Name: | jenna and sean |
| E-mail address: | jennz2010@aol.com |
| Comments: | Thanks these stories were insightful and inspiring. We are doing a biology paper on this syndrome and this site was extremely helpful. Yall are all in our thoughts in prayers. thanks, jenna and sean |
| Name: | clara |
| E-mail address: | dcdejong@shaw.ca |
| Comments: | God bless you |
| Name: | John Shannon |
| E-mail address: | john.shannon@vodafone.com |
| Homepage URL: | http://www.xxytalk.com |
| Comments: | See my bio at: http://www.xxytalk.com/fusionbb/showtopic.php?tid/81/ (you will need to register first) and see many more bio's at http://www.xxytalk.com. You are not alone - this guestbook testifies that. I found out that I was a klinefelter at age 20, and I denied it for near on 20 years. I am still untreated - and decided not to take testosterone, and my T levels are very low and my E levels very high. For me the balance is right (for others with this condition - it might not be). The most important thing or support that you folks as klinefelters, or parents of klinefelters can get is from folks that understand what this condition means - in terms of how it affects you, and what you can do about it. Even with a learning difficultly (and as someone else here shared - the ability to be brilliant one minute and dumb the next), I have managed to get a few degrees, and file a few US patents. Nothing is impossible for us klinefelters, and being a klinefelter is not a death sentence, unlike folks with cystic fibrosis http://www.pwcf.net/ the most common life threatening genetic condition. Klinefelters is the most common genetic condition, and as untreated klinefelters we share many of the same symptoms cf the young kids with CF. I'd like to encourage those guys with KS, if they have time on their hands - find themselves at home - unable or unwilling to go out - to help someone else who has a need - needs a buddy, folks that society has forgotton. I digress. Useful link in Wikipedia - about Klinefelter's Syndrome http://en.wikipedia.org/wiki/Klinefelter%27s_syndrome We are actually quite gifted - with an enhanced paretial lobe (like enstein) see: http://en.wikipedia.org/wiki/Parietal_lobe We have enhanced visual spatial thinking and can achieve genius level in visual IQ tests. We are caring individuals, part of the femnine attributes associated with the extra "X". If you are in need for a chat - or have questions - need regional support - come and join us at the fastest growing global xxy site: http://www.xxytalk.com Most of the members are from continential USA. There are a number of regional support groups popping up. The next biggest group - are the Australian's and a few New Zealanders (like myself who live in Australia). After that folks from the UK, the Netherlands, Portugal, Canada, France, Germany, Ireland, and India. Come join us. John Shannon 47XXY, Dxed age 20 Moderator http://www.xxytalk.com |
| Name: | Kristin |
| E-mail address: | kad7875@verizon.net |
| Comments: | Thank you so much for you inspiring story. My son was diagnosed with XXY at the age of 19 months. I guess you can say that I was one of the lucky ones who found out early. Since his diagnosis we have done everything we can to help him stay ahead of the game. He is now a healthy 4 year old who once was significantly developmentally delayed, and now tests age appropoiately every six months. Thank you for sharing your story. |
| Name: | Kevin |
| E-mail address: | grrsnkvn42@yahoo.com |
| Comments: | I have KFS w/osteoporosis and DVT (blood clots). If anyone can relate, please email me. We need all the support we can share with each other. My age is 43. |
| Name: | MaryAnn Frankson |
| E-mail address: | sparrow12878@yahoo.com |
| Comments: | Thank you for sharing your story. My son was diagnosed with Klinefelter's and when he told me it helped in explaining so much about him. You'll be in my prayers. |
| Name: | Tom |
| E-mail address: | tsfeagins308@yahoo.com |
| Comments: | This is a life-long battle chosen not by our parents but from the genes that produce the cells of our make-up. I was told at 15 I had KS. It explained why I did so poorly in Public School. I cannot explain why the non-KS people did poorly (LOL), but for me the disease causes an irregularity, a roller coaster of sorts for brain function. The lower amount of testosterone in my system, the more dslyxia I have. Speak words backwards and write them to. Every 2 weeks (I take my shot of 1 cc of test every 2 weeks) the roller coaster begins. I go from being 20 to 65. I am 34 years old now and I still have to fight the imbalance of withen with my spirit, my soul that is not part of othe dna sequence. This is the only thing that keeps me on a steady keel. When I am grouchy becuase of KS i resist the temptation to strike out, for it is not them that i feel in this manner. I hope those diagnosed do not look in the mirror and see a freak. I hated myself for 15 years because I am infertile, and I really wanted to have kids that smelled like me. Hating oneself is a total wast of time. There are millions of haters out there who hate you more than you hate yourself, so let them have the Job and Love yourself. Love is the Key to fight the battle of within. Thats what I feel like most of the time. Like I am fighting with myself--soul---hope vs. flesh---thoughts of oblivion. |
| Name: | gavan coleman |
| Homepage URL: | http://www.xmanova.com |
| Comments: | ok-i posted something before and it got erased please post this simple:xxytalk.com is where you can find the best information-we need you to come and join for free we need to tell the whole world what is going on here xxy is so common yet very few of us know there is open debates going on on xxytalk.com please come and join thank you for reading |
| Name: | gavan coleman |
| Homepage URL: | http://www.xmanova.com |
| Comments: | HELLO WONDERERS!and wanderers!!! if you would be so kind and let me say firstly that you have also done very well on this site to spread awareness! but i need serious debate going on so would you please join me and hundreds others at XXYTALK.com please join the ongoing research and discussion in a very friendly website there are many nationalities there we are all either xxy or we have people we know who are xxy in our lives so XXYTALK.com is the place for all of us and i hope that this dreambook keeps going but we really need to get our stuff together and unite to light a better path to helping and dealing with those of us with varying symptoms of xxy or essentially people with a different sex than the norm please come asap xxytalk.com thanks for letting me have this up here its so important that people avail of FREE MEMBERSHIP |
| Name: | Jaime |
| E-mail address: | masiste79@yahoo.com |
| Comments: | Very nice page helpfull and full of positive outlook. I have ended up with the similar results as a kid w hypothyroidism. I found out at age 40 that I had hypothyroidism. That delayed and ultimately stunted my genital development, and the phisicall characteristics are very similar to klinelfelters and hypogonadism. I just wish parents, doctors and the endocrinology branch of medicine were more proactive and educatiomnal with this disorders. Due to the fact that hypogonadism, hypothyroidism, klinelfeleter's syndrome, all need hormonal treatment from early childhood, it is a mistake, a failure, a gross negligent situation not to treat a boy / girl...consecuences being irreversible. I have a lot of hurt inside, in my mind, I feel cheated by nature, by my doctors, and even w my parents, because they were not comunicative, were they had been, I would had told them how bad I felt. Growing up was a nightmare. But, it is reality....but to finish, I am appalled to read day after day, about delayed puberty and doctors telling people, "you are oK, just wait" and the time, the window of opportunity closes at 17 years of age, much to the pasiveness negligence of doctors. Thank you. |
| Name: | shaun |
| E-mail address: | shamus1965@hotmail.com |
| Comments: | i enjoyed reading dreambook.i was diagnosed with ks at 38,and would like to hear from anyone with the same condition. |
| Name: | Amanda |
| E-mail address: | frizzly123@yahoo.com |
| Comments: | thank you for putting so much information into your website. it really helped me find exactly what I was looking for for my school research paper |
| Name: | Samantha |
| E-mail address: | samantha213@bellsouth.net |
| Comments: | Stefan, I came across your website as I was researching 47XXY for my Physiology of Behavior college course. I informed my class of your website and I encouraged them to read your story. You have done so many great things to help men and families deal with the effects of KS. There should be more people like you in this world. |
| Name: | Brigitte E. Rodgers, M.A. CCC-SLP |
| E-mail address: | brodg1124@comcast.net |
| Comments: | Thank you for sharing your experiences. I have provided a copy to the parents of on eof my patients who has been diagnosed with Klinefelter's Syndrome. I believe your story was uplifting to them. Again, thank you. |
| Name: | Justin |
| E-mail address: | justinfarrell@ireland.com |
| Comments: | Just found out two years ago that I am xxy 47.. Dont know what to say.. I am 35 years old. Feel like I am the only person.. None of my friends or family understand.. or want to understand.. Feel like A FREEK OF NATURE! Can anyone help me? |
| Name: | Jas |
| E-mail address: | aladad@charter.net |
| Comments: | I am 58 years young, I have KS and take 150 mg of testotormne every 2 weeks. I take 200mg of vit. C daily plus vit. E daily.also b1 daily. My bigest problem is the no use of my arms from shoulders down,by the end of day I'm in great pain and very weak,not it is starting in my legs from my knees down. Doctors in my town knows very little about K S . I am gouing to an incronoglist the 11th of this month with UAB.,hopefuly they can help. What I have read about other peoples complaints,it is always my penis is to small and my breast are to large,welcome to the K S world,but we have to deal with the hand that life dealt us and make the best of it. I am a very happly married ma.Got any suggestions on what I could do on my complaints. Thanks Jas aladad@charter.net |
| Name: | Jim |
| E-mail address: | Mthood1900@hotmail.com |
| Comments: | I love the website. I spoke to you on the phone a few years back, you gave me so much great info that today, I am enjoying my life instead of regreting it. I take the Androgel 5mg. every day, have grown alot of hair all over the body, have more muscles in arms and legs and my mood swings are nearly gone. You told me that a Dr. Cook at Ohsu could possibly help, so I saw him and today he is still my 47 xxy Dr.I see him now 1/year for test results. I have since gotten married to a women who has 4 boys, which is great because I am now a dad and I am in love with her. She has accepted me the way I am. All things in life are getting better since finding about k/s, that I am welcoming all that life has to offer. Anybody is welcome to e-mail me and ask questions. God Bless Jim |
| Name: | Sierra |
| Comments: | I am so sorry to hear that you have developed this disease, I am researching it for a biology class and the malfunctions in chromosome mix ups are very upsetting. Stay strong, and remembered that being different doesn't mean anything but being unique in the eyes of God. |
| Name: | Chris Somers |
| E-mail address: | Chris47@westnet.com.au |
| Homepage URL: | http://members.westnet.com.au/web/chris47xxy/ |
| Comments: | Sunday 26 March 2006 - Australia. To the parents, siblings, friends, general public, educators, medical and allied fraternity, inclusive of other care givers of those whom are 47 XXY or other genetic karyotype. Someone who was concerned with cancer initiated this note. Cancer being a general term for many different types of an often frightening, debilitating and possible fatal disease and whom assumed that those with 47 XXY were eternally at risk. Everyone whosoever they are may be at risk, some more than others, for many different reasons and many causes, some of which we know little or nothing about, though there is copious amounts of research, hopefully there will be a definitive cure and we will take heed of life changes to reduce the risk. This note is also written due to the often negative assumptions placed upon those whom are 47 XXY however they may identify as individuals, regardless of any suppositions that may be made about them or whom are, by their peers and or others. I am unsure whether I have ever written to you or not but you might like to know that women have a roughly equal chance or more of getting cancer of the breast and or cervix so would that be a good reason to terminate them; if so civilisation might well be compromised as a result. Also I believe many women would be outraged if they were recommended to have their breasts removed due to the fact a significant number may develop breast cancer. Further contrary to popular belief not all XXY children are mentally defective or compromised just as people who are 46 XX or 46 XY are not either. Klinefelter may have discovered the karyotype of 47 XXY but he also made some gross generalisations concerning those whom are, which quite frankly was unscholarly work, work that has left an indelible and negative impression on many the world over inclusive of those whom should know better. I know doctors, lawyers, CEOs of major organisations, professors and others who have achieved beyond expectation and they are not by any means as rare as you are led to believe and are all 47 XXY and anyone who thinks otherwise is living a lie. Unfortunately there has long been a stigma attached to those whom are 47 XXY amongst others whom may be intersexed, genetically, physically and or psychologically different to others. Whereas there are people who may suffer variously and may be considered anomalies there are people considered within the 'norms' who do and are too. It is up to us as responsible members of humanity to look more deeply into why anyone may be disadvantaged and ask the questions why and try to accommodate the needs of those who are, just as we might any other who is considered the 'norm' and yet may or may not have a disability of one sort or another or none at all. There is too much emphasis placed on those whom do not fit the bill of what it means to be human and instead those who survive and exist are judged as being inadequate resulting in a fear of difference, which alienates and presupposes conditions that aren't always there. This is naive and irresponsible. However if there are difficulties it is important to be able to recognise why and not always assume it is because the person is deficient but recognise that the person is different and which case certain ways of looking after and or nurturing the child and adult may need to be modified. Just as one would no longer lock up a hearing impaired person and shut them away in a mental institution because they did not understand you for the simple reason they could not hear you... they may in fact have been far more intelligent than those locking them up - fortunately this is not done anymore or exceptionally rarely. Similarly it is important that those whom are different whether they are 47 XXY or other are not generalised or put in the too hard basket of life and are appropriately treated. Other wise most people would not have the right to live and again the world would soon cease to exist. Find me a person who does not have some problem or other in life and whereas most of us do whatever genetic configuration they may be whether those whom are considered 'normal' or who have rarer genetic predispositions or are quantifiably so, whether they are 47 XXY, 46 XY, 46 XY (Androgen Insensitive), 46 XX, mosaic or many other different configurations… The world is not simplistic and anyone who thinks it is, is deluding themselves as to the reality of the world and to assume a 47 XXY person has little chance in the world is nothing but discriminatory and irresponsible. It is based on very loose evidence and may be a result inappropriate upbringing to the refusal to look more deeply into the issues as to why a given person is different… and applying due duty of care for their future… whether through appropriate education and medical care just as others in life get and take for granted. I hope this helps reinforce the positive in you all or any other whom you may come in contact with that finds that a 47 XXY person is a dilemma… Those considered ‘norm’ cannot be guaranteed to be successful or model citizens either – it depends upon many factors in life and none or exceptionally few people are immune to having any number of problems in life… that is life and the adventure of living it. With best wishes from Chris Chris Somers xxy M.Ed. by Research (UWA); B.Ed.(Melb) Hons. Diploma of Creative Photography (Trent Poly, UK) Guest Researcher at The Combined Universities Centre of Rural Health, Geraldton, Western Australia. |
| Name: | kerry gamble |
| E-mail address: | kerry.gamble2@ntlworld.com |
| Comments: | You are an inspiration to us all and your story must help so many people understand and face facts about klinefelters , My brother is 27 and has klinefelters and was diagnosed when he was six we live in England and at the time my brother was diagnosed there was no fact and klinefelters was deemed very very rare having read your story and the work you do it has helped us realise that it isnt as rare as we were led to believe. many thanks |
| Name: | Vicki |
| E-mail address: | vmelius@lsol.net |
| Comments: | My 13 year old is a ks boy. He was a lovely child growing up, but lately his moods and attitude have become a serious problem. He is now seeing a therapist and has been also diagnosed as bipolar. We have him on meds but there are days when they don't seem to being doing any good. I'm beginning to doubt that we will ever be able to have a normal day in school. He has been suspended a number of times for swearing at the teacher and principals. I am told these things are normal in bipolar kids. Every time I get paged at work I have the feeling that it's the school calleing yet again. I'm not a member of any support groups because we have none around my area. How do I get more information? Would love to hear from anyone who has erperience with bipolar or being a ks teen. Contact me at vmelius@lsol.net... |
| Name: | Neil Parker |
| E-mail address: | nbp_8@yahoo.com.hk |
| Comments: | Dear Stefan, Have read with interest your article about living with Klinefelter, I was diagnosed with it about 8 years ago, unlike your goodself I was nearing middle age (47), and living with it and inappropriate diagnosis prior to that was a veritable nightmare. I will write more direct to your e-mail account Glad you are unselfish enough to share your experiences with others, well done, the world needs more people like you to take away the stigma's associated with being 47XXY & variants, after all no-one is perfect! Best Regards Neil |