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| Name: | Bill and Ross Weber |
| E-mail address: | wgwcreative@onebox.com |
| Comments: | Thanks for your inspirational website. (And thank you for
corresponding with my friend, Sherrie Lynee.) Ross is 12 years old. I am
his father (Bill). We're looking forward to going to the conference in Chicago in August. We both need to meet successful people who have KS. My immediate concern is Ross' complaining of pains in his arms and legs, which we understand can be caused by KS. Will the HRT take care of this? His mother and I will now put pursuing this next step in his care and development on the front burner. Thank you! |
| Name: | George |
| E-mail address: | gcmorar@chartertn.net |
| Comments: | I too am doing a project on klinefelters and your site has made it very easy to comprehend. I just feel sorry for all those people who were misdiagnosed or not diagnosed at all. And i am glad that people now have somewhere to turn. |
| Name: | Caroline Snoch |
| E-mail address: | carolinesnoch@hotmail@com |
| Comments: | I love reading your story My son born 14th June 1998 was diagnosed when he was one. I knew when he was about six months old there was something not quite right. He is now approaching 5 and is very very hard work. His speech is quite bad and can be very violent. He attends school and has a helper. Kind regards Caroline South Buckinghamshire England |
| Name: | Lea |
| E-mail address: | Leaashby@hotmail.com |
| Comments: | hello! i had to do a science report on a genetic disease and i picked
this one. I had no idea what it was, therefore had no idea what I would
learn. With your story you have helped me better understand this disease!
I hope that you are living a happy life. Have a nice day! Lea |
| Name: | Kate Jami Tricia and Lauren |
| E-mail address: | kate_3737@hotmail.com |
| Comments: | We're doing a project for biology on Klinefelter's Syndrome, and we wanted to say how helpful your site has been. Thanks for sharing your personal experiances, not only to help us, but others as well. thanks again, kate jami tricia lauren |
| Name: | Darlene Castro |
| E-mail address: | DCASTRO100@yahoo.com |
| Comments: | Thank you for your dedication to KS. You are an inspiration to us all!
My son David (8 months)was diagnosed prenatally with KS and I just wish that there was more of an awareness of KS with doctors and educators and others. Thanks again and keep up the great work! Best of luck! |
| Name: | LORY GONZALES |
| E-mail address: | gsunset10@msn.com |
| Comments: | Hi I'm writing a paper for my biology class and I'm intrested Kline Filters, I'm not sure exactly what the symtoms of the disorder, life expectancy, special needs of the child, etc. I'm very sorry for those who have this, my heart goes out to you, I have never heard this before, and I chose between this and down syndrom, I would like some information. |
| Name: | Laura |
| E-mail address: | l_noseworthy@hotmail.com |
| Comments: | Your website has a lot of helpful information. Thank you so much. My
son was diagnosed with 47xxy at birth which initially came as quite a blow
to my husband and me. The impression we got from the doctors is that they
haven't dealt with very many cases of this, especially from birth, so we
have been trying to find as much info we can on the subject. Our son has
already started testosterone injections which we hope will help with some
of the symptoms. Now that we are better informed, we are dealing with
everything quite well for now and hopefully will be able to help our son
deal with whatever he may face in the future. Thank you so much again for your story and I would really like to know if there is anybody else with 47xxy or klinefelters in Newfoundland. Please feel free to contact me. |
| Name: | baby blue |
| E-mail address: | Big_m87@hotmail.com |
| Comments: | this is kool i guess kool but i wish i could help a lil' more!! good luck to all!:) |
| Name: | amanda rea |
| E-mail address: | RNestell@yahoo.com |
| Comments: | i was doing a report for my biology class and i wanted to know more about this desease and i'm sorry for those who have it |
| Name: | JOHN H ALLEN |
| E-mail address: | JA407@BELLSOUTH.NET |
| Comments: | I AM FINDING OUT THAT I HAVE KLINEFILTERS SYNDROME, I AM STILL TRING TO GATHER INFORMATION TO COMPARE WITH MINE SITUATION I HAVE THE LEARING DIFFICULTY ENLARGE BREAST AND OTHER ISSUES I AM TYING TO RESOLVE. I AM 33 YEARS OLD AND SOMETIMES I HAVE TROUBLE WITH COMPREHENSION AND I DONT KNOW HOW I HAVE GOTTEN THRU LIFE TO THIS STAGE I WENT TO OXFORD UNIVERSITY AND GRADUATED IN FINE ARTS 2 YEAR DEGREE AND GAVE UP, NOW I UNDERSTAND A LOT ABOUT MYSELF. I LIVE IN FLORIDA NOW AND I HAVE TWO KIDS I AM WORRIED ABOUT MY SON NATHAN WHO IS 5 YEARS OLD. THANKS JOHN H ALLEN |
| Name: | Eric Coker |
| E-mail address: | ecoker35@aol.com |
| Comments: | You are a faget |
| Name: | Bill Donaldson |
| E-mail address: | Chuchubill@aol.com |
| Comments: | Hi Stef, I just dropped in to get some info and send on to my Union Rep. Bill Donaldson 47xxy |
| Name: | Heather and Aly |
| E-mail address: | kraziegurlz@yahoo.com |
| Comments: | this was very helpful for our hon bio research. now we can use your expierence in our presentation. thanx -heather and aly PLHS, NE |
| Name: | mugu |
| E-mail address: | mugu@mugu.com |
| Comments: | keep off !!!!!!!!!!!!!!!!!!!!!!!! |
| Name: | Tammy |
| E-mail address: | weppler@valint.net |
| Homepage URL: | http://home.valint.net/weppler/ |
| Comments: | Thank you for sharing your story. It was nice to obtain information on KS, and to be encouraged by how you have overcome the challenges and used it to the good for others as well. |
| Name: | Kyle Dodig |
| E-mail address: | elykgidod@yahoo.com |
| Comments: | I want to know if anyone has information on whether or not I can be accepted with KS at a MEPS station for the US Army Reserves? I have prior military service, but neglected to mention it the first time around. Luckily I was never deployed over seas. This time, I don't want to take that chance and wind up with a general discharge for not being forthcoming on my paperwork. |
| Name: | Peter Sajben |
| E-mail address: | petersajben@optusnet.com.au |
| Comments: | We are all unique,beings.That`s what makes us who we are.KFS has its own problems in its self!!! But when you start,using H.R.T or steriods,then you open,up a new can of worms!!! You Tell me what are the long term side-effects,of H.R.T???? Living with KFS,and being a Bodybuilder,I Know the Side-Effects, I am One,yet NO, body,writes about it on the web,they only talk,about what,KFS is???May be we are all, missing the Bulls-Eye!!!! |
| Name: | Sadick Arthur |
| E-mail address: | coalsack@ganja.com |
| Name: | Brian S. Hopson |
| E-mail address: | bhop31@hotmail.com |
| Comments: | Fri 31 jan 2003 Happy New Year :) GOD BLEES YOU for what your doing to help us. I am glad that iam not alone. please contact me: Brian S. Hopson bhop31@hotmail.com p.o. box 181 EL Cajon, CA 92022-0181 (619)440-6043 best times to call are: monday thru sunday 8:00-11:00am & 5:00-11:00pm Pacific time |
| Name: | Mickey |
| Comments: | I just found out Jan. 24, 2003 why I am this way - it's the syndrome, I'm 61 and found out of place for almost all my life since about 5 years old. Now I know, prayerfully the "Androgel 1% gel (50mg) will bring me some normal - natural closure in my life. |
| Name: | Max Kovalsky |
| E-mail address: | maxsiuu@yahoo.com |
| Homepage URL: | http://www.xlinkz.com/ |
| Comments: | Very nice site you have :) Thank You |
| Name: | Carolyn |
| E-mail address: | Pashnts@aol.com |
| Comments: | I just wanted to thank you for your life story. I have a 17 yr old son that fits all the symptoms you described! Until now, I never thought of anything but LD's and unexplained lifelong behavior problems. He just recovered from a severe illnes that required him to see a Urologist. The doctor noticed he had small testicles. I was looking on the internet for possible causes of this when I landed on your site. I also have an 8 yr old son, whom to our surprise ended up with the same speech delay and LD's. I will definitely have them both checked out for KS. This has been so enlightening! Thankyou! |
| Name: | Charles Gorga |
| E-mail address: | silverknight95@hotmail.com |
| Comments: | I have been diagnosed at 19 yrs old when I was drafted in the Army. I am presently 55 years old. I am happy to read your story I have a BS in Engineering Technolgy which I graduated in 1992. My present wife and her family helped me to achive that goal. I have worked for the same Company for 35 yrs. But I am very happy to know how well you have done. I am also Mosaic but I thought that made me xxxy. I don't really remember my endo Doctor died about 10 years ago and I for get what he told me. Thank You Again. |
| Name: | Star |
| Comments: | Hi. thank you so much for your help with my biology project. I'm sure I'll get a good grade and that the class will enjoy it! Keep up the great work! I learned so much from you! |
| Name: | Bart Toye |
| E-mail address: | bart_toye@hotmail.com |
| Comments: | I wish you and all other people with Klinefelter a beautiful life and
much strength!!! keep up the spirit! Greetings from Belgium (Europe) Bart Toye |
| Name: | Steve |
| E-mail address: | sdh4@canada.com |
| Comments: | Hello all, just surfin the net, and found your site, its awesome to
know that someone else here in Canada has a site. I am looking to start a
support group in the Vancouver BC Area, so if there are any from the lower
mainland area, keep on looking for "KSBC47XXY" at a site near you coming
soon!! I was diagnosed at birth 1965 19 Feb, and know Im taking depo-testosterone injections IM, finding very helpful along with an anti-depressant to calm the mood swing and depression, thank goodness for those. If anyone has any questions drop me a line, it would be great to hear from you! bye for now! steve d. hames 47xxy |
| Name: | mtg |
| Comments: | it must be tough living w/ that kind of disease maybe you should tell your symptoms,causes and the treatmentsof this syndrome for people who need to write a report on it GOOD JOB it's a verry well written article |
| Name: | mtg |
| Comments: | it must be tough living w/ that kind of disease maybe you should tell your symptoms,causes and the treatmentsof this syndrome for people who need to write a report on it |
| Name: | Ivana Williams |
| E-mail address: | IvanaWil03@aol.com |
| Comments: | Me and my partner for a project in biology read your rage about
klieinfelters and we appreciate the fact that you put your info. about
your disease out for the public to see and research. Thanx alot and we
plan on having a great presentation! P.S Tell your son we said Hi! |
| Name: | Jane - mum to 17 year old son |
| E-mail address: | Rogerlock@btopenworld.net |
| Comments: | Have just found out today that my 17 yr old Son, Giles has Klinefelter Syndrome, it has been a big shock for my whole family. Giles on the surface has taken it well - I am just totally gutted. |
| Name: | Sinker Road |
| E-mail address: | sinkerrioa@hotmail.com |
| Homepage URL: | http://www.free-press-release.com/ |
| Comments: | Great Website! Happy new year! |
| Name: | Edmund Scott |
| E-mail address: | scobri@saber.net |
| Comments: | Thank you for your story. I am 68 and wish I could tell about my life to someone, but I think it would be very difficult. The most difficult feeling to deal with in my life was, "fear." I was always afraid of things that other people found exciting. I remember that (at high school age) I was afraid to use the telephone the first time. I also was afraid to drive a car and was terrified when my dad told me he was going to give me a car. Oh well, I just wonder if there are others who experienced this terrible fear of everything when they were young. Thanks again for your story. Edmund |
| Name: | Bill Mulkern |
| E-mail address: | billthe3rd@earthlink.net |
| Comments: | Anyone in New England? Come to the next meeting of NEXXYS - Northeast
XXY Support - Sunday, February 23, 2003 at the Lahey Clinic, in
Burlington, Massachusetts. Until recently, NEXXYS was called the "Klinefelter Syndrome Northeast Regional Support Group." Stefan Schwarz founded the Support Group, and I took it over in 2000 when Stefan moved to Pennsylvania to live with his fiancee and her kids. You can email me at the above address, or call me, at 617-472-3237. |
| Name: | Charles O. |
| E-mail address: | roneziv@cybrzn.com |
| Comments: | According to the Anderson Hypothesis, there is a connection between dizygotic twinning and aneuploidy. It follows that one would expect a higher incidence of 47XXY amoungst fraternal twins, as opposed to the general population. My question is this. How many of you 47XXY folks were fraternal twins? |
| Name: | Charles O. |
| E-mail address: | roneziv@cybrzn.com |
| Comments: | Just recently discovered your site. Although I do not have Klinefelter Syndrome, I am intrigued by the condition, in so far as it offers a window to an increased understanding of human sexuality and personality. To the extent that the condition occupies an intermediate position in what is normally thought to be a bipolar male-female world it would seem to offer insight into what it means to be male or female. I would be interested in any explanation of gender dysphoria as this concept seems incomprehensible to those not afflicted with K.S. It occurs to me that this condition might explain some of the seemingly unexplainable aspects of human behavior. I present this hypothetical to those of you who are experiencing this condition: would it not seem to be the case that Michael Jackson, the rock star has 47XXY ? How about the actor, Christopher Walken? |
| Name: | Dave Moorley |
| E-mail address: | davemoorley@msn.com |
| Comments: | Bravo Stefan!! You have done an excellent job. This is exactly what I have been looking for most of my life. This is a chance to hear from someone else with Klinefelter's syndrome. It's awesome to see someone with this condition not be held back by it, but rather use it as a motivator to achieve his ambitions and help so many people along the way. I am 43 years old, married and have a wonderful step-daughter. I have a sales job with a major American hardware retailer and get along very well with my co-workers. It's taken me a long time to reach this point in my life. I use humour as a coping mechanism. I love to make my peers laugh. I always knew that somehow I was a little bit different. I was picked on and harassed constantly as a child going to school. Puberty was a nightmare. I never started shaving until I was about twenty-five. My family, as loving as they were, didn't know how to cope with K.S., so inevitably it got swept under the carpet. You know "If we don't know what it is, it will go away". I know what the lack of self-esteem feels like and the lack of self confidence. I experience mood swings, anger, frustration and the general feeling of just feeling blah. I have come to accept myself much more now. I have a more positive outlook. I took testosterone injections for years and then I was on a testosterone patch for a short time. Now I use an androgel cream that I rub on, that goes immediately through my skin to my bloodstream. It's painless. I take a small prescribed dose every day, so my moods are relatively constant and generally feel better than with the shot. For those that experience erectile difficulties there is something called Papaverine/Rogitine/Prostin 8. It is very effective and does not leave one feeling sick. I have read that a number of people with Klinefelter's are gifted computer operators/programmers. My gift isn't with computers, but rather numbers and factual information. I can remember dates, phone numbers and events precisely as they happened years ago. I now look forward to each day and the challenges that it brings. Please feel free to contact. Dave |
| Name: | Paul B. Harris |
| E-mail address: | pewonder@aol.com |
| Comments: | I am 38 yrs.old and I just found out yesterday (12/16/2002) that I
have KS 47(XXY). I thought that I was alone and now I am relieved when I
found your site. I could relate to many of the comments made by the other
people on your site. There are still questions I have about KS(XXY).
|
| Name: | juan carlos |
| E-mail address: | jc_marshall2002@hotmail.com |
| Comments: | im not going to write so much because i dont know so much english. the only thing that i want to tell you is that im doing a project about your disease and i took you as an example of people that live with diseases, god bless you |
| Name: | Peter |
| E-mail address: | walltemple@hotmail.com |
| Comments: | Hi Stefan, What a great web site about KS - there must be something about discovering yourself at 25 years that you have KS, as it was about this time, I found out that I was different. I sort of had a sixth sense about it, but didn't know how to find out about the condition. It's pleasing to know that some of my actions that I have encountered over the years, can be explained as being part of the KS condition. I live in Sydney, Australia where there isn't any KS organisations to "spread the word", so it is very grateful that your web site and your story provides all KS sufferers with knowledge and understanding that they are not alone. Keep up the good work, and take care, Peter |
| Name: | Owen Gallop |
| E-mail address: | klwtsn@aol.com |
| Comments: | I was Diagnosed at the age of 17 and am now 20. I have had almost the same problems as yourself and many others. I am inspired that you can talk about your problems as i find it extremely hard to talk of mine to anyone including my loving fiance.The medication in form of patches has worked up until two weeks ago when i found out my level had dropped drastically.My biological father was an American, but i have had no contact.I am about to be adminestrated with injections and so wish that it works cause i feel so low and so depressed about the most silly things. I admire you for your courage for which ican not grasp as yet but wish to in the future.I still get very upset about not being able yo father children, but still know i have to accept this fact of life.I have seen so many therapists since the age of 11, but this has not helped my long term grip of life.I wish to seek further help, and find it hard to talk about my problems, but hope and wish someone can help me gain control once again. Good luck to you in the future and everyone else with the same challenge we have been given to conquer XXY and all other forms of KLINEFELTER SYNDROME.Owen. |
| Name: | Jason Pacheco |
| Comments: | Good Luck! |
| Name: | Marygrace Hall |
| E-mail address: | s_mghall@clarion.edu |
| Name: | Landry Griffin |
| E-mail address: | Ldgriffin@AOL.com |
| Comments: | I think it is amazing that you have lived your life with this and
still made it this far. You are in inspiration yo all of us here at
frenship highschool. Me and my friend Brinnen were researching your
disease and i think it is amazing how far you have come. Landry Griffin |
| Name: | abornloser48 |
| E-mail address: | have none,don't try to contact,using a neighbors computer |
| Comments: | I signed the book previously, don't make an attempt to call no one. Steph, great site, congradulations. Yes, I have klinefelters, yea I have no testrogen in my body, Yes I have woman like breasts, Yes I have the desire to make love to a woman, that will never happen, no errections of any kind, just alot of kissing and eating..In my case suicide is the answer, no doubt about it. When I get some balls, I will take the next step. Doctors are like car dealers, a bunch of bull shitters, haven't found one that knows his ass from a hole in the ground..not one doctor...I reside somewhere, alone and very depressed, and I need to laid. |
| 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. |
| Name: | Tanaye |
| E-mail address: | superstar_856@yahoo.com |
| Comments: | Your story was very touchind as well as interesting. I appreciate your honesty. |
| Name: | Jo-Ann Ward |
| E-mail address: | joann.ward@btopenworld.com |
| Comments: | I am married to the most wonderfull man in the world. His name is Gary
and he has KS (47XXY). He has been diagnosed for 7 years, and is only just being able to seek any treatment. I want to thank you stefan for developing such a woderfull website, it is so informative, and has helped us great deal, in moving forward and hopefully getting some hormone treatment for Gary. We plan to complete our family by adoption, wich we hope will be realised very soon. Jo-Ann Ward. xx |
| Name: | Raquel |
| E-mail address: | lilshorty060@aol.com |
| Comments: | hi stefan I'm 17 years old and have a baby boy who is 3 months right now and i just found out that he has klinefelter syndrome. in a way it is good because they found it out very early but i am very stocked still. i read your story and it helped me out a lot. i would like to get some info from you some time. thank you very much. |
| Name: | Emko |
| E-mail address: | emkooo@yahoo.com |
| Homepage URL: | http://bustysister.com/ |
| Comments: | Really cool site, I haven't seen this for a long time. Thank you! |
| Name: | Andrew Griffin |
| E-mail address: | andygriffin@orion-online.com.au |
| Comments: | Hi, great story and you should be proud of your achievements. I live in Queensland, Australia and support groups here are not so informative as those that you have been involved with in USA. I was also aged twenty five when diagnosed with KS, I am now fifty four, suffered two strokes three years ago,that have left me with 60% loss of eye sight and a serious loss of immediate memory retention.I am also a diabetic. These days I am on a Disability Pension, but would still prefer to be working, I believe that I still have something to offer. Don't worry I am not forgetting that there are some poor souls in the USA and other parts of the world of recent times that are much worse off than I, being alive is a bonus. Perhaps we could correspond by e-mail at some stage. I admire you, keep up the good work. |
| Name: | Gail Whelan |
| E-mail address: | gailw@alphalink.com.au |
| Comments: | Hello Stefan, What a revelation to read your site! I am a retired nurse who is particularly close to a frail uncle and his son, my cousin. My uncle has 46/47 mosaicism and his son has 47 K.S. They both live happy and very full lives. My uncle is not as active now as he is in his mid 80's and has developed emphysema and gout. My uncle had a long and strong marriage. He also has a daughter. She does not try to understand my uncle and simply argues with him. Consequently they don't see each other as much as usual. Possibly that is one of many reasons that my uncle and cousin ring me so often. We live approx 50 miles apart and I am not very mobile for health reasons but we speak on the phone between 3 and 20 times per week. My cousin is a voracious reader and has a particular interest in the American Civil War. He has made several trips to the U.S. for holidays and loves it. All good wishes, Gail Whelan |
| Name: | patricia |
| E-mail address: | CRUZ4US@OPTONLINE.COM |
| Comments: | MY HUSBAND AND I JUST GOT THE RESULTS OF MY AMNO. OUR SON HAS XXY-KLINEFELTER SYNDROME. NOT SURE WHAT TO THINK OR DO,CAN SOMEONE PLEASE SEND INFO REGARDING KS.WE ARE VERY NERVOUS AND NOT REALLY EDUCATED ON KS. I HAVE SOME QUESTONS WOULD LIKE TO ASK.WOULD LIKE TO KNOW IF THERE ARE ANY SUPPORT GRUPS IN THE LONG ISLAND AREA. THANKS SO MUCH |
| Name: | Matthew Gross |
| E-mail address: | Phatimatti@aol.com |
| Comments: | I read your piece on the history of your life. I find it to be
absolutely amazing. In some apects we are very similar. The learning
disabilites that you have i also have the exact ones. Its great to know
that there are others out there. I am 21 years old at Adelphi University
in Long Island, New York. I am from St.louis, MO. I still have yet to meet
another with Kleinfelters. i love what i am. I would like to start another
group around the long island area and the st.louis area. if there is any
information or ideas of helping to create this group, that would be very
much appreciated. thank you very much. to all the parents out there and the boys/men that have this, be supportive as possible. give them 110% out of 100 everyday. My parents helped out as much as possible, without them being so understanding, i don't know if i would have made it to where i am now. Mom and dad, i love you both more than anything. All i have to say is just be there for them. And if you are a friend, just be there. that is the key to life. Friendship throughout the family and friends is the way all of us should be. "put a smile on your face, the rest will fall into place" by matthew gross Matthew Gross feel free to email me at Phatimatti@aol.com thanks again |
| Name: | Bruce W Dudley |
| E-mail address: | scafedi@aol.com |
| Comments: | e-mail address not mine,roommates.I'm 52,have KS,xxy-body,w/ some xyy behavors,also found to be Transsexual.Have had life w/basic KS,but more towards trans/crossdresser.My info tells me TS came from KS at least in my case.TS happens 1-in-18,000 births,male or female.Comes from a hormonal imbalance inuitial that lets the brains hypothemis to continue to be female,woman trapped in mans body.If we TS males want to change to females means MTF.Girl who want to change are FTM. I found i had KS when i was 40yrs.old.I found i was TS 2mon. ago,was married 23yrs.If you think KS life is hard,look into TS life http://www.geocities.com/HotSprings/Chalet/4555 /toc.html Get back to me if you,i d't knw any KS's. |
| Name: | Bruce W Dudley |
| E-mail address: | scafedi@aol.com |
| Comments: | e-mail address not mine,roommates.I'm 52,have KS,xxy-body,w/ some xyy behavors,also found to be Transsexual.Have had life w/basic KS,but more towards trans/crossdresser.My info tells me TS came from KS at least in my case.TS happens 1-in-18,000 births,male or female.Comes from a hormonal imbalance inuitial that lets the brains hypothemis to continue to be female,woman trapped in mans body.If we TS males want to change to females means MTF.Girl who want to change are FTM. I found i had KS when i was 40yrs.old.I found i was TS 2mon. ago,was married 23yrs.If you think KS life is hard,look into TS life http://www.geocities.com/HotSprings/Chalet/4555 /toc.html Get back to me if you,i d't knw any KS's. |
| Name: | Morton Oughton |
| E-mail address: | moughton@shaw.ca |
| Comments: | Dear Stephan, We conversed sometime ago. Your doing a great job of the site and helping others to understand themselves. I have read most of the stories and can relate to many of them. It was a struggle for me going through my teen age years. I am doing fine now, have come out to who I am. I am proud of who I am. Life has given me many challenges and I have grown so much. Your site is excellent, I do hope all is well with you and your loved ones. Take care. Mort |
| Name: | Shawn Baltimore |
| E-mail address: | shawnbaltimore@hotmail.com |
| Homepage URL: | http://www.msn.com/ |
| Comments: | Hi Stefan, Thank God, I found your web page. I don't think you remember me. But I will just move over to a few details of mine. I am 25 years old and work as a Technical Writer for an international company in the middle-east. I was diagnosed having 47xxy at the age of 13. That too after spending a lot of time submerged in depression due to regular teasing from my fellow classmates for being different. I had an incomplete masculine body build, and social as well as school learning problems. Moreover, I found that my breasts were having some pretty unusual developments too. I was given a course on testosterone and even today I just don't feel anything towards either sex. I don't have a lot of friends, nor any girl friends yet. I have a bit of a large frame weighing just 87 kg with 6.6 foot in height. But I don't know why I have a strange passion for computers. I can say I am quite good at my profession. Anything on computers, it is like a birth trait. Truly fascinating. But when I cam to your site, I found about other people like me who have the same skills may be more than me, of course. I like your site and the material contained. It brings relief and hope. Thanks! For your taking your personal time to bring us all together as a Family and educate us on the ways to overcome depression and a feeling of guilt. Thanks Stephan! . Shawn Baltimore Any friends willng to talk to me or mail me can reach me at my address: Shawnbaltimore@hotmail.com |
| Name: | Michael |
| E-mail address: | mykee_o@yahoo.com |
| Comments: | A very interesting story Stefan! I found out when I was 19 that I have
it. That was 26 years ago. Thank God for HRT. I am gay and testosterone
changed me from a bitchy queen into a man. Life has been rough, and I've
sometimes referred to myself as an android. Out of all the extra
chromosome syndromes, I'm grateful it was Klinefelter and not something
worse. Good luck to you guy and hang in there. Life isn't fair. |
| Name: | Paula |
| E-mail address: | paula701@hotmail.com |
| Homepage URL: | http://www.amateur-cutie.com/ |
| Comments: | agree with Drew Your site deserves an award! Your site has my vote too. |
| Name: | Drew |
| E-mail address: | email@changinglinks.com |
| Homepage URL: | http://www.changinglinks.com/ |
| Comments: | Your site deserves an award! Your site will get free traffic and more exposure online. just add a reciprocal link to http://www.ChangingLINKS.com it is a free link exchange (for non-commercial sites). kind of like a huge random web ring - but without all of the ugly code. Please visit http://www.ChangingLINKS.com suggest a link. |
| Name: | John |
| E-mail address: | easyrider@intas.net.au |
| Comments: | Hi Stefan, we have emailed about a year ago and I have accidentally
found your site again. You are doin g great with your informative site and
helping so many of us who want to learn more about our ks syndrome and how
to live out our lives day by day...not easy but we are persevering. I was diagnosed when I was 35. I was fortunate that apart from having reduced genitals, less musculare development, less body hair; behavourily, usually weakly heterosexual. A homosexual (13.5% ks men are homosexual ..this percentage is much higher than in the general population of about 2%). Through medical research it has been discovered that most gays have gay relatives on the maternal side of their families).I didn't make friends easily...I tried but the boys were not interested in befriending me, neither were the girls. I was teased, bullyed and picked on by my peers in state school and the whole school in high school. Regardless of these set backs and my brother telling me that I was queer, resulting that though we shared the same bedroom he would have nothing to do with me. I went to University and graduated and I am enjoying my single un-partnered life. Being gay I have experienced a great deal of rejection as most of my would be partners saw the exterior and not what was between my ears. Whatever we may look like, we will all grow older and change in our looks but our inner self grows and enlarges and becomes beautiful. Yes depression is our shadow but chins up guys we all should be proud of the people we have become. John. |
| Name: | NormaJean Garski |
| E-mail address: | njgarski2006@hotmail.com |
| Comments: | I had found your story to be quite interesting. I myself had trouble
growing up with this but just thought I was just dumb. but after reading
this page of yours i was very moved by it. i am going to pass this on to
my boyfrined i think he would find it very interesting also. thank you for a nice letter NormaJean Garski 32 years old Wisconsin |
| Name: | Michele G |
| E-mail address: | gromitrulz@yahoo.com |
| Comments: | Stefan, What a great site, story and inspiration!! My boyfriend, whom I live with, just recently found out that he has Klinefelter Syndrome. Because of obvious characteristics, I had suspected that this was the case for some time, but we just got the chromosome analysis back. He is experiencing the same relief you discuss in your story, as he now has an explanation for some of the things he has thought or felt throughout his life. If you read this, I would greatly appreciate an e-mail back. If you can share some of the coping mechanisms that you came up with to help with some of the learning issues you had, that would be fantastic. Oddly, he, too, is involved in the computer field, and you remind me of him to some degree. Also, how are the testosterone treatments going for you? Thanks Again, and Good luck to you and your family! Michele |
| Name: | Shera Lee Cleghorn |
| E-mail address: | 011086slc |
| Homepage URL: | http://msn.com/ |
| Comments: | I liked that story it made me cry and think about other people be sides myself have a good the rest of your life I will help people more with stuff by love U tell your mom I said HI that I love everyone of yal that is in UR group and at home |
| Name: | Lauren |
| E-mail address: | ltalbot@uark.edu |
| Comments: | Hi! Great site! I am doing an assignment for my child psychology class on chromosome disorders and the emotional, social, psychological effects it has on the children who have these disorders. This website led me to tons of information. Great job. |
| Name: | greg cantor |
| E-mail address: | cantorg#hotmail.com |
| Comments: | i was diagnosed with kleinfelter syndrome at 37 years old. i am one of twins. he did not get it. i have only 1 close friend. no girl friends ever, regrds fellow sufferer from sydney australia. |
| Name: | Gilb |
| Homepage URL: | http://www.smashingthumbs.com/ |
| Comments: | good work |
| Name: | Pal |
| Comments: | <A href="http://www.tripod.com">Free WEb space</a> |
| Name: | Christopher Allen Marsh |
| E-mail address: | mailto:marsh_monkey@hotmail.com |
| Homepage URL: | http://www.expage.com/marshmonkey |
| Comments: | Yo what's goin on, this is chris i have 47XXY and i am learning more about this syndrome everyday that i live with it! So i hear you are dignosted with it too, My mother is Julie you haved Talked to her before in herre'! anyways im 17 and i am a 11th Grader!~~ so if you would like to email me you can as soon as possible if you would like at marsh_monkey@hotmail.com Thanks and have a nice day Peace Out!!!! Chris |
| Name: | Kimberly |
| E-mail address: | trmll328@cs.com |
| Comments: | Although, I have not experienced knowing anyone personally with KS. It
was definitely an inspirational story. My oldest son was born with medical
problems (cephallic lipoma, and absense of the corpus collusm), I myself
have my own share of medical problems as well. Your story proves to me,
that no obstacle is too big to overcome because its just that, an
obstacle. It's meant to be worked around and not overwhelmed by. I will take your inspiration and push forward, around, under... which ever direction has to be taken not to let an obstacle take over!!! Thanks for sharing, Kimberly |
| Name: | maria cabral |
| E-mail address: | lovemetender71@msn.com |
| Comments: | Hello, I am in Denver Co. Im a college medical student Im writing a
research paper on klinefilter syndroem. I would really appreciate your
feedback and be so kind to educate me on the desease. I hope the best for
you and family. |
| Name: | Sharon |
| Comments: | I am so grateful for your web site. My husband has been diagnosed with klinefelters syndrome and I am his support person for finding out things that relate to this disorder. We've only been married for a year and now we both know why so many things were challenging for us. But God is good and our faith is strong and I do believe that we are going to make it. God Bless All Of You. |
| Name: | Kathy Ward |
| E-mail address: | klposhbird@hotmail.com |
| Comments: | My Eldest son has klinefelter i was told that it was possible that all
my boy children might have it too. I have three others so I was very
worried. The testing porved negitive. we were also told the klinefelter is a mixed bag and some suffer much worse than others. My son is also happy & married. They will foster childern to make their family. The best of luck to you Stefan (my youngest sons name too) I wish you well Kathy Ward |
| Name: | Ernie Gonzalez |
| E-mail address: | needprayertoday@earthlink.net |
| Comments: | I'm a male who has XXY chromsome, 48 years old, find out about 2 years
ago. was sad at first because now I understand why I was different, and
went through a double life. even went as far as Hormone shots, shaved body
and lived as a female for some time, but now I found Jesus Christ accepted
him and He helped me through the changes of becoming who he wanted me to be. his chosen. I praise god because even though I was born this way, I now pray for others for Peace and salvation. I pray if you needprayertoday@earthlink.net email me thats what you will get. |
| Name: | chris |
| E-mail address: | Heyjudecf@aol.com |
| Comments: | My son has something very close to Klinefelter Syndrome He has XYY. There doesn't seem to be much information or research that I can find. He also has mild retardation and attention deficit disorder so his is a very complexcase as far as proper medication etc. If you know of where I can find out more about this syndrome please e-mail |
| Name: | katrina whittaker |
| Comments: | excellent work well done i think you have done a great job |
| Name: | Dr. Igor V. Vinogradov |
| E-mail address: | viv7@online.ru |
| Comments: | RUSSIAN EXPERIENCE OF TREATMENT OF KLINEFELTER’S SYNDROME.
Dear Sirs, Since 1971 in Russia in the scientific - clinical centre of Àndrology and transplantation of endocrine organs under the direction of professor Igor Kirpatovsky were conducted the development of new methods of treatment of chromatine-positive variants of Klinefelter`s syndrome . The transplantation of donor testicle was made to more then 200 patient with 46,xy/47,xxy and 47,xxy variants. In 25 cases the transplantation of cells of testicle, hypophysis, hypothalamus were made. Operationed patients were examinated surveyed in the early and late postoperational period. The results were compared with the control group of patients which were receiving just synthetic hormone therapy (the number of patients - 12). It was found out, that operation of the transplantation of donor testicle leads to normalization of the hormonal phone, sexual habitation and rehabilitations, positive changes of a phenotype on the terms up to 10-12 years without additional reception of hormonal preparations. Application of the special circuit during 3 months after the operation has allowed to reach(achieve) 100% implantation of transplants. The transplantation of cells gives less marked on duration effect up to 3-5 years, however is more easy transferred by the patient. I’ll be pleased to provided any further information. Please do not hesitate to contact me. Yours faithfully, Dr. Igor V. Vinogradov The director of training department For contact me write: E-mail VIV7@online.ru |
| Name: | Sean M. Meadors |
| E-mail address: | SMMV144@aol.com |
| Comments: | Hey Stefan, I'm sure that you probably don't remember me at all since
it's probably been at least two or three years since I talked to you on
the phone. But since then I caught a brief show on tv one night where you
were on it talking about Klinefelter's Syndrome and well to make a long
story short I didn't get to see enough about it but I do remember you real
well. Your like a SUPER HERO!!! to some of all of us who has Klinefelter's
Syndrome. I wish that I just had the same ambishion that you have in doing
what you have done to help people I admire you alot. If there has been a
book printed about Klinefelter's Syndrome please send me some information
on how to obtain a copy of it. Once again thanks for being there for a
bunch of people. Oh by the way I have the most common one 47xxy and found
out about it five years ago. I'd like for you to answer me one question
though. If I would have found out that I had this when I was hitting
puburty is there a great possibillity that my life would have been and
different? If you could please help me into understanding this problem and
why am I so different than other men. Yours Truely, Sean Meadors |
| Name: | Casey Moore |
| E-mail address: | caseman@onebox.com |
| Comments: | This website really helped me with my problem, i always knew that i
had a problem with me, but i always thought it was Aspergur syndrome. When
i figured out that i had this syndrome, i was shocked, scared, and a
little excited that i had finally found out the mystery of my life that i
could never solve. After reading the note from this page, i noticed that
this would be easy to get used to. I owe all my thanks to Steven for explaining this to me. thx |
| Name: | Suzie Stewart |
| E-mail address: | marysstewart@hotmail.com |
| Comments: | Stefan, this is such a great page your enthusiasm for helping others with Klinefelter syndrome is so impressive. I'm a senior majoring in special education at Auburn University-your page helped me see that passion for others is true advocacy. Thank you-Suzie Stewart |
| Name: | Bob Rollins |
| E-mail address: | bobsaemt_2@yahoo.com |
| Comments: | just letting you know that I got you call, but was unable to get back to you at that time. My girlfriend and I have a lot of questions and I will be calling you soon. Thx |
| Name: | robert hairston |
| E-mail address: | sweetdaddy62@hotmail.com |
| Comments: | hi ya Im just doing some research on this subject because I think I may have (ks) as well, also your story and those updates were very inspirational. I thank you for including your story with (ks). Be well robert |
| Name: | P.Bowers |
| E-mail address: | madniteowl2002@yahoo.com |
| Comments: | I forgot to mention that I am very good with computers and researching
the internet. There are some many free sites that offer ideas on
generating computer music. This is not just a carreer to me,it is close to
heaven on earth. Others can feel free to contact me regarding KS Here is some helpful links: www.amazingfacts.com www.bibleuniverse.com www.computergeneratedmusic.com Thanks!! :) Midwest |
| Name: | P.Bowers |
| E-mail address: | madniteowl2002@yahoo.com |
| Comments: | I read your story and was impressed1 I am a 47 y.o. male who was
diagnosed with Klinefelters Syndrome about 10 years ago. I was in the
National Guard at the time and was complaining of severe headaches. I also
had severe mood swings and did not have a lot of friends,a Loner. The V.A.
in Portland,Ore. examined me and discovered that I had a Pituatary Adenoma
Tumor. It produces a lot of Prolactin and has thrown my whole
hormonal,immune system out of whack. When I was a teenager,I would'nt
shower after gym class with the other boys,consequently I failed P.E. My
teacher called a conference and informed my parents that I refused to take
showers. When asked why,I told them that the other guys said
vulgar,sexually explicit stuff to me,my parents and teachers asked,Why? I
told them that I had breasts like a girl.My mother told me not to worry
about that,that all men develop those after they reach a certain age and
weight. She said even your Dad has them. I never questioned my Dad,because
of the resulting embarassment. The V.A. said that I had the Pituatary
Tumor since I was at least 14 y.o. Things were not the way they are
now,back then it was different,you did'nt talk about such things. My Dad
was fairly open to talk too,but he worked away from home a lot as a
geologist. My mother was'nt very understanding back then or now. I just
recently saw my Neurologist and told them that my Gynesmastia has gotten
worse,we did some tests and they may increase my Parlodel and Testosterone
levels. I hope so! I've been married 4 times,had 1 child,then I was told
by a Doctor that I am infertile. I have been living in a successful
relationship with a woman who has s son with severe behavioral,ADHD
problems,she was involved with someone long before I came along. She looks
out for me. Here in the last few years,I've discovered that If I get a
mosquitoe bite or a scratch,it turns into an ulcerated sore,very painful.
The doctors say that is happening,because my immune system is damaged. I
have to use anti-bacterial soap to do personal hygiene. I view myself as a
freak! A man with a womans breasts. I am straight as an arrow. My lady
tells me not to worry,but even she has noticed that I am getting bigger.
It is a total embarassment to me. In the summer,I don't go around with my
shirt off. I am opening up here to all. I am not saying this to get
compassion or sympathy,just to let others know that they are not alone. I
have also been diagnosed with chronic schizophrenia since 1991. I take
meds. and see my doctor for regular checkups. I discovered that as I got
older,certain things that were once important to me,no longer hold value.
I am a firm believer in pursuing your dreams,bettering yourself and
helping others. Since moving to the Midwest from Oregon in 1995,my life
has changed for the better. I got a chance to help people who have a
mental illness by becoming a Peer Support Specialist/Consumer Advocate.
Before the program was terminated,I did a lot of in-home visatations,held
classes in skill development and self-advocacy. And started a support
group. I have attended 3 Mental Health conferences back here and am still
considered an active Consumer Advocate. I am a Writer and will soon be
developing my idea of a dream job,Music Composition/Production/Recording
Engineer. I want to record and sell my own unique style of Electronic
Music Compositions,learn how to be a recording engineer and eventually
open a studio in my community. God allowed me to go through all of those
rough times in my life,so I could be the kind of person I am today. I
believe that nothing happens to us by chance! God's gift to us is Life,our
gift to God is what we do with that Life. I have my Musical talents and
abilities because of Him! We all have something to share with others,we
can all learn from each other. Thank You for allowing me to open up and share what I have been holding back for so long. Have a great,"Cool" Summer!! :) Best Regards: P.Bowers |
| Name: | Mitch Scoggins |
| E-mail address: | meat31031@accucomm.net |
| Comments: | need to change the e-mail address to this one made a mistake |
| Name: | Steph |
| E-mail address: | k.xxy@medscape.com |
| Homepage URL: | http://www.xxy.com-1.net/ |
| Comments: | Hi Stefan, How is married life treating you? Apologies for the long delay and no contact, but that's life as they say. I have been busy spreading the Klinefelter story including a radio broadcast this morning on BBC Radio 4! Also our group at Smartgroups is going well, www.smartgroups.com/groups/klinefelterxxy I came across your Dreambook while doing a search. Please send me your Email address as I have lost it. The Klinefelter Orgainsation (formerly the KSCUK) is unfortunately folding up. More news on my website. Regards Steph (in Bonnie Scotland) |
| Name: | mitch scoggins |
| E-mail address: | meat31031@accucom.com |
| Comments: | Hi, I just came across your site and I throughly enjoyed reading your story. I found out I had KS47xxy while in the Marine Corps in 1993. I am 29 yrs. old now and would be interested in communicating with others in the KS community God bless you, Mitch |
| Name: | Gina Witherspoon |
| E-mail address: | wecandoitffl@aol.com |
| Comments: | Your story is so encouraging to me. My 19 year old son has just been diagnosed. We are looking for any support in Fort Worth, Texas. Also, if anyone lives here who also has ks. I am so happy for you and your success and happiness you have found. I hope my son finds a place in his life where he can be successful and happy too. God bless you. |
| Name: | jim |
| E-mail address: | bluebottle17@yahoo.com |
| Comments: | Just thought that I would say hello and to inform you that the doctors
now refer to klinefelter syndrome as 47xxy as not every guy has the
syndrome. Even though they have the extra "X" Great site. Not sure if the
spelling is totally correct. But hey its close enough. I found out that I had 47xxy when I was 40 and thats when I started to get the jab. I am now 49 and I am sick of the jab so I am on the pill instead. Any way got to go, if any one wants to get in touch, its ok with me. Warmest regards. Jim 22/6/02 |
| Name: | Linda Miczuga |
| E-mail address: | La_chick_48@hotmail.com |
| Comments: | Your story was very informative ,my Grandson was diagnosed with ks a few years back,and is now a teenager. I am very interested in anything on ks to tell his mother who is very concerned. Thank You |
| Name: | karrin |
| E-mail address: | karrinlee1968@aol.com |
| Comments: | would like info on any support groups |
| Name: | Jim Gillett |
| E-mail address: | nighthawk01230@yahoo.com |
| Comments: | Hi Read your story and was happy to hear there is someone out there like me. Your story was very familiar and I too struggle with the whole school thing. I enjoy working with computers though. I would enjoy attending one of your support groups. I will try to call you with the number you listed on the web page. Thanks, Jim |
| Name: | Travis Wilhelm |
| E-mail address: | trivs@hotmail.com |
| Name: | alix james |
| E-mail address: | mailto:www.alickcub@yahoo.co.uk |
| Comments: | I'de like to know did you find the info that you were looking for!! Im a 33 year old Man living in Manchester England,I was diagnosed when I was 21,Wasnt told much at all, only really that I was in need of Testosterone?Sustanon 250'every 2weeks for the rest of my life,however I have been on this Medication for 12 years now and dont seem to see any changes to my body shape&voice,inwhich the Encrinologist I saw at the Royal Liverpool Hospital assured me that there would be some Masculination to my body,so far nothink apart from 2 gynacomastia operations,abdomen taken away,and many many psycological problems in which who do you speke to!! there doesnt seem to be any body ive ever spoken too who knows what there talken about!!and why all the mystery,Im a type of guy who wants to know!! but have never been told if you have any info could you please e/mail me thankyou for atleast reading my e/mail...my regards alix manchester/England U/K.. |
| Name: | Rachel |
| E-mail address: | rachel@free-amateur-tgp.com |
| Homepage URL: | http://www.free-amateur-tgp.com/ |
| Comments: | Best site on the web. I love it here! |
| Name: | william harvey |
| E-mail address: | willharvey25@yahoo.com |
| Comments: | I am a klinefelterand fro your website i understanded a lot of things.I appreciate the work done by you which is very very helpful for the people like you including me. |
| Name: | Laverne C.Bishop |
| E-mail address: | l.crillybishop@att.net |
| Comments: | Dear Stefan and family, Thank you so very much for your story and all
of the inspiration you have generated from your web site and related help.
I am a grandmother of a young teenager, 18 yrs. who graduates this June.
His mother, my daughter, just called this week to inform me that my
grandson is being tested for this condition KS, and prior to this call, I
had never heard of this very sad condition. Thanks to you, and all of the
responses I have read, I know their is hope and help for my family and
especially my grandson. I am going to email, right now,to my daughter,
your web site. Is there anyone in the specialists field, that you would
recommend in the Virginia area? Also, is this an inheirited disease? My
twin sister and I, both have SLE (or a close variation of this auto-immune
disease and wonder if their is any relation? Heretofore, we do not know of
any other relatives having this disease, but that is one of the questions
very much on my daughter's mind? Again, thank you so very much, and I wish
you and your family the very best that God may continue to bless you all.
Sincerest prayers and thoughts, L. Bishop |
| Name: | Tiffany |
| E-mail address: | TiffanyTimm153@msn.com |
| Comments: | Hello I am a student from Iowa. In our Biology class we are doing a
project about KS and we came to your site and read your personal story
which helped us with understanding KS from someone who has to deal and
live with this disease. I would just like to ask if you have any other
sites that you think would be a great help to us and our researching about
KS please notify us! Thank you so much for sharing your story with us!
Sincerely, Tiffany |
| Name: | Donna Ginn |
| E-mail address: | dmbcyg@yahoo.com |
| Comments: | Thanks for your openness. My prayers are that my son does as well. I
pray you will continue to help we parents to find better treatment for KS
Blessings Donna |
| Name: | Wade Trenholm |
| E-mail address: | wade_trenholm@hotmail.com |
| Homepage URL: | http://www3.sympatico.ca/wadenkristy |
| Comments: | Enjoyed reading your story, since I've recently found out that I also
have Klinefelter's Syndrome. I have lots of information to find out, and I
know it will take time on my part to sit down and do the research to take
it all in. Thanks, |
| Name: | Taylor Johnson |
| Comments: | I'm very touched by your story. I'm a student who came upon this site
looking for a answer to a question concerning the symptoms of the syndrom
and read your story and thought very highly of it. I congradulate you on
your success and I agree that one should never give up. Your story is
inspirering and I hope that you will continue to make it avaliable to
others to read! Taylor J |
| Name: | Dru |
| E-mail address: | kilburri@hotmail.com |
| Comments: | Hi Stefan, I know exactly how you have been feeling. I was diagnosed with KS when I was 25 years old while working in New Zealand. All through my younger days I always felt on the outer with everyone. I felt different in so many ways but could never put my finger on the reason why. What disappoints me most is that my Parents did not seem to realise that I was perhaps different from other boys my age. I suppose in those years (1950 to middle 60's, not many people were aware of KS), so KS went undetected until 1973 in NZ. After finding out so much about KS on the Internet, I can now relate to a lot of things that I have read about and realise why I felt the way I did for so many years. Feel free to contact me, I have yet to converse with anybody else who has KS. I am presently living in North Queensland, Australia. |
| Name: | Jack McGrath |
| E-mail address: | Rustyshouse@snip.net |
| Comments: | I am 59 and was diagnosed at 57 with KS. I too had difficulty with my
younger years. My wife thought I was weird because I didn't do the things
that "normal" men do. Since the diagnosis though, she has been most supportive and considerate to my "problems".Keep up the good work and may God bless you and your new family. |
| Name: | Sharon |
| E-mail address: | none |
| Homepage URL: | http://none/ |
| Comments: | My five year old son has just been diagnosed with K.S, thanks for the
information on this syndrome its been a great help to me and my partner
and its made me realise were lucky to find out so early in his life
|
| Name: | Arthur |
| E-mail address: | yogibear@Junglist.com |
| Comments: | I have Klinefelter Syndrom and I need support! and friends that also have Klinefelter Syndrom I am 17 I live in Southern California and I only found out that I had Klinefelter Syndrome a little over a year ago. I was born in Wisconsin and just moved to California. Also I hope to meet a girl my age that has Klinefelter Syndrome and has alot in comin with me and maybe even lives near me! + if you have a chatroom on the subject that would be really cool! But anyway thank you for letting me sign you dream book and letting me leave my comments! THANK YOU! |
| Name: | willy |
| E-mail address: | willie_5m@hotmail.com |
| Comments: | thanks for the site. |
| Name: | C.C.N. |
| Comments: | I wish you all the best for the future! |
| Name: | Elvira |
| E-mail address: | elvira@american-eskimo-dogs.com |
| Homepage URL: | http://www.american-eskimo-dogs.com/ |
| Comments: | Amazing job you have done with this site! |
| Name: | john |
| Comments: | hello, I have this Klinefelter Syndrome have been taking shots since I was 25, I work in the computer field and do really good at it.. |
| Name: | cedric powell |
| E-mail address: | cedricp3@excite.com |
| Comments: | God has blessed you through your times. May he bring you maor peace
and happiness. Cedric Powell 16 yrs old duncan high school duncan, oklahoma 73534 |
| Name: | david poulson |
| E-mail address: | david.poulson@cognicase.com |
| Comments: | Support avaiable in Toronto? |
| Name: | Bianicka |
| E-mail address: | Bianicka_16@hotmail.com |
| Comments: | Hello, I am a High school student,and i am interested in this abnormality..and i found your page,and you jelped me understand it a little bit better.And I am only 16 years of age,and ingnorant to half the world,you have helped me learn a little bit more on this wonderful Monday of March. And i would like to say thank you,for being so brave to put you life on the internet to help people like me,and young men , to understand this disability. Thank you So very much, Your friend, Bianicka (Sorry if i mispelled any words...I think i did =P) I hope to hear from you soon....feel free to email me |
| Name: | Yury Seagull |
| E-mail address: | YurySeagull@hotmail.com |
| Comments: | I am doing a project on Klinefelter Syndrome and I would like to know
if any of you would like to share any information with me that i would be
able to present and educate my class with. Thank You, Yury Seagull (P.S. My other post has the wrong E-mail) |
| Name: | hans mathews |
| Comments: | i am doing a report and your info is great |
| Name: | Cameron Evenson |
| E-mail address: | cwevenson@3web.net |
| Homepage URL: | http://www.geocities.com/heavenly_resident/index.html |
| Comments: | Hello. I have been taking medication for my Klinefelter's for sometime now. However, the biggest thing Ifind about the condition and the medical system in Canada is that people up here seem to be scared of those that are different then themselves. And because of this they label and discredit us. Actually, as an example the Manitoba Medical system labels a genetic condition as being caused by inbreeding. And because of this results in poorer medical care. What I like about Stefan and his information is there is no labels, we have a equal footing with him. |
| Name: | CLIFF S. MUTHARD III |
| E-mail address: | kippy_15@hotmail.com |
| Comments: | I ENJOY EATING WITH YOU ATURDAY MARCH THE 2nd 2002. I HAD A VERY NICE
TIME ANDI HOPE I CAN MEET YOUR FRIEND THAT OWNS HIS OWN LANDSCAPING
BUSSINESS. I WOULD ALSO LIKE TO MEET YOUR STEP SON AND OTHER PEOPLE IN
PENNSYLVANIA WHO HAS KLINEFELTER SYNDROM. I HOPE TO SEE YOU SOON AND TALK
TO YOU AGAIN. |
| Name: | megan |
| E-mail address: | foxicheerchic16@aol.com |
| Comments: | hi i am doing a report on klinefelter syndrome and i cant really find much info on this it would really help me out and im me about this. thank you |
| Name: | Christianne Rival |
| E-mail address: | criwaza@hotmail.com.au |
| Comments: | I am researching this because my brother who is 40 this year has this syndrome. He is much as you describe yourself. I am a Mental Health nurse and have come in contact with many men with this unfortunate syndrome and have found that here, at least there is no understanding from doctors, including psychiatrists. I will tell my brother of your site. I think it's inspirational. |
| Name: | kaylee |
| Comments: | i was doing a science project and we had to pick a diese and i picked this one cause it realy touched me. |
| Name: | Ashley Carmicle |
| Comments: | Hope you still have a good life! |
| Name: | STEVE MARTINE |
| E-mail address: | CHOPPER476319841@AOL.COM |
| Comments: | HI MY NAME IS STEVE,I TO FOUND OUT WHEN I WAS OLDER THAT I HAD KLEINFELDERS SYNDROME.I CAME HOME AND TOLD MY DAD THAT I GOT THIS GIRL PREGANT.BOY WHAT A SUPRISE I GOT HE THEN TOLD ME THAT I WAS STERILE BUT TOLD MR KNOW MORE.MY SISTER TOLD ME IN 1991 WHEN I FOUND OUT I HAD BREAST CANCER,WELL MY LIFE HAS BEEN HELL SINCE THEN.I HAVE HAD SOME GOOD DAYS.I AM A HOSPICE PATIENT AND THEY ONLY TAKE ON PEOPLE THAT ARE DYING WELL I MADE IT THROUGH 3 TIMES SO FAR AND I WENT TO THE REUNION AND I WAS THE ONLY ONE THERE.GOT TO HAVE SINCE OF HUMOR WITH WHAT I BEEN THRU.I AM ALSO 17 YEARS SOBER.I THOUGHT EYERYTHING WOULD BE OK AFTER THAT.ON A SCALE OF 1 TO 10 MY PAIN WAS A 10 OR HIGER.I HAD A SURGERY AND ON A SCAL OF 1 TO 10 ITS AROUND 5 TO 6.THANKS FOR STARTING THIS I WAS LOST OF WHO TO TALK TO.I HAVE HAD A LOT MORE THINGS HAPPEN.BUT I DON'T WANT TO BORE YOU.1 GOOD THING I GOT BACK ON MY HARLRY CHOPPER.1 DAY AT A TIME |
| Name: | kat |
| E-mail address: | ktshamgrl@hotmail.com |
| Homepage URL: | http://signdreambook.com/ |
| Comments: | hello, i am doing a report for school on this topic. i think it would be really interesting if i talked to people with the experiences. i have not found that much info on it so it would be greatly appreciated if you can e-mail me with your personal stories on how it happenned and what your doctors recommended for treatment if possible. thanks. |
| Name: | Allan Gueck |
| E-mail address: | Gck2931@aol.com |
| Comments: | I was diagnosed with KS when I was19 or 20 years old.I was trying to enlist in the Army but, I failed the physical.My parents sent me to a specialist.They did all kinds off tests on me and thats when they found KS.I got picked on in school because I looked different and life has been tough for me ever since.I'm now 49.Twenty years ago I was taking testosterone shots once a month but,had to stop taking it because I didn't want to give myself shots.I regret that decision and now want to start taking it again. don't know who to see or where to go to get someone to help me.Ilive in Mooresville,N.C.Please let me know where to go so I can get back on testosterone.I have a weight problem and believe the testosterone would help me lose weight.It feels so good to finally talk to someone who knows what I'm going through.I havn't read your book yet but,would like to.Please e-mail me and let me know where to go.Thanks,any help would be greatly appreciately. |
| Name: | Leeann Pellegrin |
| E-mail address: | boyziv@hotmail.com |
| Comments: | Hi Stefan, we have spoken before; my lovebug is Kyle 31 months, 47 XXY. Keep up the good work, you are an inspiration to us all!!!!!! |
| Name: | Anne and James Knight |
| E-mail address: | lincoln65@aol.com |
| Comments: | Hi, Stefan. Just read your site about living with KS. My husband
James, has KS. We have known since 89 - he was about 32 at the time. He
would be interested in talking/writing with you about coping with KS.
I know everyone is not the same. While you had testosterone injections, he has a high level. I do not know his signature of x and y. Information is much more available now on web vs 1989. Thanks! v/r, Anne Knight |
| Name: | Marti Dalton |
| E-mail address: | none |
| Homepage URL: | http://none/ |
| Comments: | Hello, My son who is now 15 was diagnosed 1 year ago with KS It has been a great help to finally know why he is different than other boys. And also to know why he has always had a hard time in school. I have a question for you. Last April he had a grand mal sezier. Do you know if this is something that occurs because of the KS or not. If you could write to us that would be good. I have a computer at home but can not afford internet services. Our address is Marti & Eric Dalton 1208 Homedale Rd. Klamath Falls, OR. 97603 (541)883-3848 Thanks, hope to hear form you soon. Marti PS. havn't had the time to read your book yet, will soon. |
| Name: | rich |
| E-mail address: | a_klinesmen@yahoo.ca |
| Comments: | Hi I am 34 years old. Last year I found out that I had KS. While
researching the characteristics of KS; answered all the questions I had
throughout my life. I was happy to find this out while I am still somewhat
young (sooner would have been better) I can now take the therapy and get
on with my life. I would really appreciate it, if I could talk with someone who has taken the testo. therapy. I just started the therapy last week and I have many-many-many questions. |
| Name: | Michael & Barb Deakyne |
| E-mail address: | starfleet1@mac.com |
| Comments: | Stefan - Thanks for all the help you have given us in the past and the support you will provide for the future! Michael, Barb and Kyle |
| Name: | Baker Woods |
| E-mail address: | kl1inetime@aol.com |
| Comments: | Yes i too am a suffer of KS and i am embarrased to say so. I need emotional support and would like anyone else suffering from what im going through to chat with me either through instant messenger or emails. It would mean a lot to me, thank you all very much. |
| Name: | Randi Reed |
| E-mail address: | Divadivine28@aol.com |
| Comments: | Thanks for all of this infrormation. I am a high school student who is doing a report on Klinefelter and this has helped me out alot! Thanks so much I really do appreciate it from the bottom of my heart! I am so sorry that this has happened to everybody. My little brother was diagnosed last year @ age 10. |
| Name: | Victor & Kimberly |
| Comments: | Thanks for the information. |
| Name: | Geraldine Briceno |
| E-mail address: | Geralet@hotmail.com |
| Homepage URL: | http://www.gobriceno.com/ |
| Comments: | Good bless you!!!!!!! |
| Name: | Gary & Marcee |
| Comments: | Very interesting and informing site...you are doing a great job.
|
| Name: | Chuck Dadoly |
| E-mail address: | mailto:chuck%20@%20uwsi.net |
| Comments: | Thanks for the inspiration and information.I was diagnosed when I was 32( 1987). I have other handicaps as well. I strive to do things in my own way. Hence, many people aren't aware of my difference. |
| Name: | a worried mum |
| E-mail address: | ssndunn@aol |
| Comments: | Hi i have a four year old son ,who as just been diagnosed as having
49xxxxy, i would like to hear off any one else who as this, who could give
me any information. I dont know what to expect.How best to help him
thank you a worried mum |
| Name: | Gustin Jramenz |
| E-mail address: | askthecivteam@firaxis.com |
| Name: | Penny Schwarz |
| E-mail address: | penita@home.com |
| Comments: | Your story is most hearwarming. You should be very proud of your
accomplishments both in your personal life and with the Klinefelter
community. Keep up the good work. Penny |
| Name: | Bob |
| E-mail address: | congwatchr@aol.com |
| Comments: | I will read your story soon. I found out part of my story at 26, and the KS part at 32. When I learned I would never be a daddy, my life felt over. Nam was hot and I was a military officer. I volunteered. The idiots in personnel sent me to Iceland. So I did not get my honorable way out. Now I must accept and be creative. There are no roadmaps. I know how I feel. I'm not too sure how to find women who stay after they hear the story. I have already experenced the pain of loss of deep married love. The Feb 2001 issue of Modern Maturity details what happens when a man does not satisfy. Per a research psychologist at GA Tech, most young women who are spouses of low/no testosterone men search elsewhere for what they feel they deserve as young women, while they are still young. |
| Name: | jason malashock |
| E-mail address: | pimpinjm@hotmail.com |
| Comments: | THANK YOU SO MUCH FOR THE INFO U A HVE GIVNEN TO ME AND MY PARTNER ON YOUR DISODER IT HAS HELPED US VERY MUCH |
| Name: | Kelly |
| E-mail address: | puerto_rican_shorty2001 |
| Comments: | I am doing a report on kline felters syndrome and really can't find
any info. If you con help please email me as soon as you can.
Thanks. |
| Name: | Kser |
| E-mail address: | kser25@rediffmail.com |
| Comments: | Hi! I can feel why all u KS people r so depressed. I have this wierd syndrome too. I am between a lot of friends and wellwishers who don't know anything about this syndrome. I am a man and so r all of u. The trouble with us people is that we can't have children. But so are thousands of couples around the world. I have not undergone any treatment till now except for HR for a month or so. I have been depressed during my teenage. But now I am quite confident thanks to the God who is my best friend. I take my life as it is and do not worry much. I eat healthy food, do exercise and feel happy. Believe me I am not on testosterone replacement therapy. All u need to do is to eat honey with bananas and exercise regularly. And yes, u've need to find a mission for urself to live for. God bless all. |
| Name: | David Main |
| E-mail address: | flirtinwna@aol.com |
| Comments: | Hi my names David and i was diagnosed at the age of 18 with KS. I am
46 now and have had a very rough time at life thru the early years. I got
involved with drugs at the age of 13 and thru school did very poorly. When
I was 17 i develpoed a deep vein thrombosis in left leg and it broke free
and i devoloped a pulminary embolism, need less to say i was in hospital
for 2 weeks and after that thru the years had over 100 blood clots in my
legs and 5 pulminary embolisms. I was diagnosed at 18 while in the county hospital with another blood clot in leg and they noticed about the size of my scrotum and asked if i wanted to stay another 2 weeks to do a study to see why it was this way tho they suspected it to be KS as my wing span is greater then my height. Anyways to make a very long story shorter,I got clean off drugs and alcohol when i was 33 and go to NA 12 step program been clean and sober for 13 yrs now. I am 6'5 and just recently had surgery for gastric bypass as i had heart failure in July and was weighing close to 500 pounds, the surgery went fine but many complications incured afterwards and stayed 5 weeks in hospital just coming home the day before Thanksgiving and getting stronger everyday. I thank God for this place to come and share about my dealings with dealing with KS thanks for being here Love you all and God Bless David |
| Name: | Jonathan D Petersen |
| E-mail address: | the_rhythm_king@yahoo.co.uk |
| Comments: | Hello there. My name is Jonathan and I am a 28 year old KS "male"....I put that in quotes because even though I have all the attributes of a man I do not feel like one and never have. I was diagnosed when I was 15 due to an abnormally slow developmental rate at puberty and take Sustanon "250" shots every 30 days. I am also just coming to terms with the fact that I too will never have a girlfriend. From the exterior people assume that I am a gay male because of the feminization. I also never "chat up" women because I feel a fraud. They may acknowledge me as a man but I know deep down that I am not so I feel like I am cheating them on some level. Some lesbians have been attracted to me sexually but why have me when they can have the real thing? Aside from these little trifles I am relatively happy and appreciate each and every day that I am alive. Love and Light to you all, XXXXXxxxx. |
| Name: | Matt B |
| E-mail address: | psycho56437@yahoo.com |
| Comments: | I am donig a school report on KS and I need to find some good info on
it, and maybe ask a few questions for people diagnoised. If you would like
to help me, please contact me @ psycho56437@yahoo.com Thanks a lot Matt |
| Name: | Janet |
| E-mail address: | pakula25@hotmail.com |
| Comments: | I have a 2 year old son who was diagnosed with KS while I was pregnant
with him. While it was a shock, I was thrilled to be having him. He has
been a happy boy and I could not love him anymore. This story has helped
me to understand a little more of what I need to do for him to help him to
get the most out of life. Thank you so much for sharing it and yourself
with all of us. |
| Name: | Don |
| E-mail address: | Communicaster@webtv.net |
| Comments: | Thank you for sharing your experiences with others that have the same syndrome. I am 48 and have had a pretty productive life even though i felt so different from everyone else. I knew something was wrong aroung 12 or 13 but was too ashamed and embarrased to say anything to my parents. My last year of high school I finally mentioned something and they sent me to the University of Minnesota. They tried many things to help me and some of it really helped. I still felt so alone and ashamed. I felt that I was not a (man). I guess that I was really looking for trouble when I went into the army. I really put up a tough guy facade and hid my undersized penis and testicles,( supposed maleness) so i wouldnt be laughed at. While I was in I asked to be treated and they started giving me injections. I have continued them through the V.A. here in Minnesota. I am surprised how up on the subject they are. Life hasnt been easy. I am resigned to the fact that I cant have children of my own. Have had serious boughts of depression and married a woman with kids already. My advise is to not settle, we may have something wrong with us but we are still OK. I really felt good reading your guest book. I knew there had to be others out there but had not ever seen or talked to anyone that has this syndrome. God Bless |
| Name: | Stephanie |
| E-mail address: | Swimchep@hotmail.com |
| Comments: | I am doing a report on this syndrome and I feel for all of you that
have it. Just live your life and enjoy yourself!!! Merry Christmas!!! |
| Name: | Kristi |
| E-mail address: | k_broyles02@hotmail.com |
| Comments: | I also researched your page for a biology paper. It was very helpful and your story is overwhelming. |
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