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| Name: | Garry ives |
| E-mail address: | Leapness4@hotmail.co.uk |
| Comments: | Hello there my name is garry and I have ks. I found out in 1996 I was 18 at the time I knew in away that I was different I was sent to special school call gorege pringle. Thay called me lazy and stupid and the other kids were hurtful calling maget boy and small willy and tranny as I had tits the teachers said I didn't try I was lazy and I was putting it on. So After school I want to college fresh start where I wouldn't be forced to have a shawer after p .e so no one could make fun on me. College was great I made friends had my first sexual girl friend life was great she left me for someone with a bigger nob as mine was to small for her since than college over got a job in retail met someone married 11year last year she left my me has she want a family of her own I did to but ks wasn't going away. She left me for some one with a bigger nob again so thats too that say nob size matters. Skard over ks. Have now reach a point in my life where I don't have any confidence with the laddies. and have been down with life. klinfelters r otherhas taking my life as I don't have any friends as don't have the confidence to live it. But i'm please there r others like me with ks thank to this site. Please feel free to email me and ask any question i'd,be happy to hear from anyone. P.s there may be a couple on spelling mistakes sorry also not to good wuth full stops there may be some missing here and there thank you for reading |
| Name: | John |
| E-mail address: | avro_arrow10@yahoo.com |
| Comments: | Ahoy mates! Just found out about me being 47XXY this past summer of 2011! I found it odd that I never impregnated anyone in my teen years. This sight is a god-send for us KSers.I often felt that because I was conceived when my mother was 42 years of age, had something to do with my condition. Or the fact that my father had some dealings with a handi-capped woman. Anyways i would love to share my experiences and hear from the rest of my fellow bretherin. Peace. |
| Name: | Jerry |
| E-mail address: | gjerryla1@yahoo.com |
| Comments: | I'm 60 years old and have KS for the pass 16 years. |
| Name: | Anthony |
| E-mail address: | anthony.bianchi@katamail.com |
| Comments: | Hi My name is Anthony also known as Antonio. Im currently 35 and live in Sydney, Australia. I was diagnosed with KS at an early age maybe 14. For a while my mother had me at every doctor and every clinic to find out what was wrong with me. I had no clue what my mother was going on about but i knew there was something wrong. After a while my mother found out about "the doctor" of KS and wanted ot visit him in California, Los angeles and then as a family we went. I met him and at the time the testosterone patches where just coming out in America, but took some time to make it to our shores. Im glad im diagnosed with this condition now and not later in my life. I know what my limitations are. I work hard as a successful fashion designer and hopefully, fingers crossed my label will be released this year 2012. Im not married as im a gay man. My family are accepting as my friends are also. I have a wide range of interests. I would like to get to know more guys out there who have my condition. |
| Name: | Andy Amberg |
| Comments: | Have KS. I am 28. Put on gel hormone for 2 years by endocrinologist (aweful choice). Endocrinologist BIIG waste of time. I studied herbal test boosters, with incredible difference. With shoulder gel, sperm count low, sex drive low also. With herbal test boosters, over time(2 weeks and further), it's like, wow!. It is not unusual for me to become excited sexually 2 or 3 times a day, sometimes more! Now, my sperm count is nowhere near low. Over the 6 months I use herbal test boosters, sperm count went up drastically! I too, like many of you, fear the idea of medicines, doctors, even supplements. But after trying medicine, then herbs, changed my life. You have to get complexes. Something like tribulus, alone is not effective enough. The one's I like are primarily universal nutrition complexes. There are about 3 different ones. I also use 20 ecdysterone high extract at 300 mg per capsule (remember this is herb from plant). I might take different one's together etc. Ofcourse, I also take brain supplements herb combinations/multis. I also eat right and love to exercise. My muscles are incredible, although I suffer from slight gyno, from KS, but I think I might get rid of it. THANKS! |
| Name: | keith |
| E-mail address: | keithsutton13065@btinternet.com |
| Homepage URL: | http://www.southwestvisions.co.uk |
| Comments: | i am a 53 yo klinsfelters, i found out when i was 16, had a lot of years to get used to it, NO you cant have kids, but sex and social problems are just a state of mind, if you are a young ks sufferer, you may grow breasts, i had mine surgically removed, only probs i seem to have is i dont like rules or authority, and i catch infections real easy, nont grow body hair that thick either, but that saves on shaving, good luck growing up with it guys, BUT you are not alone |
| Name: | JAMES BRUCE RUSSELL |
| E-mail address: | j.russell2006@hotmail.com |
| Comments: | Hi,my name is James.I am a 47 year old male living in Thunder Bay Ontario,For most of my life it has been rough for me,I am looking for others who have this to talk too.for many years I have been getting blood clots in my legs and nobody knows why,not even my doctors and I was reading up on this and 1 of the health issues with having klinefelters sydrome is blood not flowing properly through the legs,when I told my doctor about this she was blown away,she said shes never heard of this.alot of people dont know about this and we need to get this out to other people.my mother wrote to Dr.Phill and asked him to do a show on klinefelters.shes waiting for his reply back.I am so happy to have found this site and look forward to talking to you all. |
| Name: | John |
| E-mail address: | admin@completeclean.com.au |
| Comments: | Hi All John here 34 year old male, living in Brisbane Australia I to have klynefelters, for most of my life it has been rough for me with the ups and downs. I have been on the testosterone for 16 years and I am now tring patches, gells and creams Iv been having no luck. the needles I was on were fine for about 15 years, then I started having problems. My blood started to thicken and my himogloben was rising to around 196 were it should be around 120 to 130. since this happened iv beed tring every thing eles looking for something new. If any body knows of some thing could you please email me with your advice. My life is going down hill at the moment and Im in fear of losing my partner and every thing I have work for. Im glad I found this page Iv all ways thought I was an odd one out. All emails are welcome. Thanks |
| Name: | TOPHER |
| E-mail address: | tophersurvay@hotmail.com |
| Comments: | im 24 in dec i have klinefelters and wish i could get my wife preg.. it sux hard we want one so bad have been trying for 3 years and nothing... is there anything u know of to help.. have a good life and remember that there is always tomarow nothing bad lasts forever |
| Name: | thomas |
| E-mail address: | tuokeweier1986@hotmail.com |
| Comments: | i am one of you from the opposite side of pacific ocean, from China, who lives a panic life , how u guys deal with it? Eager to share your experiences |
| Name: | antony |
| E-mail address: | ahsr@gmail.com |
| Comments: | friends iam 24 yr old ks boy with few symptoms.i hate using medicine for life long.without medication ca i be all right?i am perfectly ok.and my problem is about sex.can i give perfect sex life for my future wife without any medication.my pennis hardens but not sure how perfectly strong it is?any ks SEX EXPERICED WIFE OR HUSBAND share me pls plss plss very much waiting.. |
| Name: | LARISH |
| E-mail address: | parlapalli0007@gmail.com |
| Comments: | i am 22..i have ks..and i am hairy too...i came to know i cant change anything expect my thoughts to be happy..i am in a great problem...i have a sweet lover..i told all about ks even thoughn she likes to marry me..the problem is can i give her 100 % sex life without any treatment..?i dont wanna use all that..that too life long treatment is horrible... so any married persons or wife of ks people say about your sex life ..pls dont mind.. |
| Name: | Alfredo Sanchez-Maldonao |
| E-mail address: | loscanos@yahoo.com or asmgvgctp@hotmail.com |
| Homepage URL: | https://www.facebook.com/ |
| Comments: | I wanted to resign your notebook and let you all know that I have finally found peace. Don't leave Klinefelter's syndrome go unchecked; don't you think that by sweeping it under the carpet that it will be alright. You have to face the part of your life that is proven difficult. Just talk to someone. I can honestly say that I feel much much better today than back in August and Its because I have taken control of my life and I have not let my syndrome take control of me. Exercising helps a lot but the most crucial aspect of it is socialization with family and friends. Forget what the doctors say or what not, half of them don't know much about. Be very careful with the dosage of depo-testo that you received as In my case I learn the hard way and lost a person very close to my heart. I finish my college education this Spring and I can't wait to continue onto my masters. I am very excited and continue to practice parkour. Pls let me know if there will be any sessions in Houston in the near future. |
| Name: | larry |
| E-mail address: | lhawks27@yahoo.com |
| Homepage URL: | http:// yahoo |
| Comments: | im a 42 male with klinefelters,looking for others to talk to.thanks |
| Name: | Kitty |
| E-mail address: | assepoet@hotmail.com |
| Comments: | HI I'm Kitty, my boyfriend has klinefelter. I've always know, it never seemed to mather. 3 Years later the relationship is so serieus that children play a part. The fought of that struggle worries me and makes me sad. I'm curious how other woman deal with this. The thought that your man is not really like other man. That you'll go through struggles other women don't have to go through. |
| Name: | Pavan |
| E-mail address: | pavan_y2k3@yahoo.com |
| Comments: | Hi, I'm a suspect of Klinefelter's Syndrome of age 29, i have small genitals and i carry a large mid portion of my body with obesity from abodomen to thighs. This makes me look ugly. I want to know by joining the gym can i reduce this bulgy portion. Is there any harm doing this. I'm eargerly awaiting your answer. thanks and regards Pavan |
| Name: | BBChin |
| E-mail address: | beabeachin@gmail.com |
| Comments: | Dear Stephen: It has been quite some time since I had last written to you. Alexander is now 10 and doing okay...some emotional outburst every once in awhile, but a hugh difference within the last few years. Academically he is fine, smart and diligent about his homework, but reading is a little fustrating. I am talking to the school psychologist about a "504" medical form. My husband and I did not want to "label" him at first, but with middle school two years away, and we see the work load our older son brings back, I am concerned and now considering a "504" medical form before he enters middle school. I am now at the point where I need to locate a pediatic endo, preferably one that specializes in Kleinfelters. I live on Long Island, NY and I was wondering if you have any recommendations? I am not happy about the possible hormone and steroid treatments, but I figure I should find one and at least start the discussions about what are his option. So, any help you can give would be appreciated. Take care and be well. |
| Name: | robert davis |
| E-mail address: | rob1a@q.com |
| Comments: | does anyone out there that has ulcer's on the leg's i've had them since now, and in 69. the doctor today are putting pig skin, they grow it, i have two of them on two diffrent feet i deal with them off an on for 40 year's i got very poor ceulation in both feet, and it caues them not to heal well. am also dieabatic i have to insulin every night. i also have parkin disorder, i take ropinirole, for the shack. am 68 when i was told i was ks, the doctor's told my mom i wouldn't live 48 hours, well i proved them wrong don't belive in doctor, there not god, and tell you wrong thing. |
| Name: | Vanessa |
| E-mail address: | vhinds@gmail.com |
| Comments: | Reading this page has been both helpful and confusing for me. My 20 month old son has KF, was diagnosed while I was pregnant with him. So far he's been a wonderful baby, extremely happy and good natured, no temper tantrums at all, in fact he rarely even cries, just smiles and laughs a lot. I find it extremely hard to get any good info on growing up with this, and learning what to realistically expect in his future. So much info is conflicting. One thing that seems strange is I keep reading that he will be extremely tall, but on the contrary, he is WAY small for his age, and his pediatrician seems to think he will always be short in stature. Anyway, I'd love anyone experiencing this to email me. Whether you have it, are a parent of someone with it, or a relative, etc and can give me any ideas on what to expect, when to tell him, hormone replacement etc. THANKS so much in advance! Vanessa. |
| Name: | Zachary |
| E-mail address: | killer.donut@gmail.com |
| Comments: | Hello. My name is Zachary D'Alessio. I am 21 years old, residing in North Carolina, USA. Upon my birthday physical at 18 years old, I was presented with the possibility of Klinefelter's Syndrome. Prior to, I was a competitive swimmer, putting nearly seven hours of extreme physical conditioning a day, and I was not building any muscle. I questioned my doctors, for years, with no answer. I finally got it. I tried all forms of transdermal and buccal treatments for three years with no effect. I refused intramuscluar treatment, as I was told by others that it is quite painful. I am currently on Testopel, which is a synthetic-testosterone implant that I receive through minor surgery very three and a half to four months. Resources and information regarding Klinefelter's Syndrome are very, very limited. Acknowledgement of doctors about this syndrome is few and far between. Luckily, there are a few support groups on the web, but currently, there's a group on FaceBook that will attend a lot of afflicted individual's needs. It is comprised of diagnosed individuals, as well as parents of individuals who are too young to have a FaceBook account. We're building knowledge and awareness. Please, join in, and drop a line. The more people we get together, the more we can help each other, right? http://www.facebook.com/group.php?gid=7479209263 Zachary. |
| Name: | Artur |
| E-mail address: | arturxxy@gmail.com |
| Homepage URL: | http://47xxy.strefa.pl |
| Comments: | Hi Stefan. I am 33 years old and live in Poland. For many years I was not aware that I am sick of Klinefelter's syndrome, despite the characteristic symptoms. Your story presented on the web. If you have time, have a look. Unfortunately, I speak little English. Greetings from Krakow.... |
| Name: | Boomama |
| E-mail address: | coolbritgirl@yahoo.com |
| Comments: | Hi Stefan, You may not remember me but I'm one of the many women who contacted you when I was diagnosed during my pregnancy with an xxy son. My son is mosaic and so far hasn't had any learning issues but nonetheless, you are responsible for me keeping my baby. He is a true miracle to me. I had him at 40 and could never imagine without him. He's articulate, artistic, display's leadership qualities and is a confident child. I became depressed during my pregnancy and after but he's 5 now,just started kindergarten, and we are both well and optimistic about the future. Thank you Stefan. Claire |
| Name: | Reann |
| E-mail address: | rea9@aol.co.nz |
| Comments: | Hi, I am 36 years old and have KS47xxy. I have just been reading through some of your readers comments and it is quite sad as I was not diagnosed until i was 16-17 yrs old. However over the years i have flatly refused any form of Testosterone as i do not feel male, I have met alot of transexuals etc but not actually someone with klinefelters who is feminine like myself I guess you could say i have embraced my femininity more over than the male part of my identity.. It would be nice to know if any other people with klinefelters or someone they know who has it has gone more to their female side... Thanks Rea |
| Name: | si flaxman |
| E-mail address: | babasi66@yahoo.co.uk |
| Comments: | hi new to all this i am 44 years old found out 5 years ago i have K.S. and i am I am diabetic too, have had mental illness for many years and no one to talk too,drs said i was makeing K.S. up. |
| Name: | Jeremy Knox |
| E-mail address: | historical-pirate35@live.com |
| Comments: | I am a KS survior with XXY. I still struggle with KS and I have a learning disability as well. |
| Name: | robert davis |
| E-mail address: | rob1a@q.com |
| Comments: | am gay and alone, no one to related to, am 67 and i live the united states wanting to have someone i could share my life |
| Name: | Dr. Shaival K Rao |
| E-mail address: | shaivalrao@gmail.com |
| Comments: | hi..I am a Klinefelter with XXY condition...been married for five years, No kids, Sucessful in my career.... |
| Name: | Eric Dalton |
| E-mail address: | eric.james.dalton@gmail.com |
| Comments: | I found out that I had Kinefelters in Highschool and have had a ruff time getting on my feet in life, i try and try but even the system fails to recognise the obvious difficulties in being a male that has Klinefelters.I have done research online for symptoms associated with XXY and found a Dental problem that affects those born with a cromazone disorder its a rare tooth disease that according to the national health association affects less than 200,000 people in the US population its referd to as Taurodontism, I am 24 and have had 9+ teeth pulled and not to mention with out my depo testostrone shot i have absolutly no drive to do much of anything, But at very least i will never give up on life...Love...my Art or my Poetry. I always Knew i was different mentaly i belive i have a unique view on life outside of the norm outside of the box and i would say Live life each day as if it was the first as if you have just opend your eyes for the first time, experiance what you can while you can... for the fact is, time is forever fleeting and thou time may be infinet in designe we unfortunetly are not. Live to the fullest that you can muster, Love with every fiber of your being, and Never Give up or get Beat down by those who will not understand or who can not understand. Take it easy out there and best of luck on Life's Great Journey! |
| 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. |