Many people have benefited from visiting HYPOHH.net as you can read below.
You can click on a name and send a e-mail reply to that person if you want to.

I want to say something too...

July 2000 (3 postings)
August 1999 (3 postings)
November 1999 (2 postings)
December 1999 (3 postings)

January 2000 (7 postings)
February 2000 (4 postings)
March 2000 (8 postings)


March 2005 (1 posting)
April 2005 (4 postings)
May 2005 (1 posting)
June 2005 (3 postings)
July 2005 (5 postings)
August 2005 (9 postings)
September 2005 (2 postings)
October 2005 (1 posting)
November 2005 (8 postings)
December 2005 (3 postings)


January 2006 (4 postings)
February 2006 (5 postings)
March 2006 (2 postings)
April 2006 (x posting)
May 2006 (x posting)
June 2006 (4 postings)
July 2006 (3 postings)
August 2006 (5 postings)
September 2006 (x posting)
October 2006 (x posting)
November 2006 (x posting)
December 2006 (x posting)

1999

Sheil Makan July 20, 1999
I was diagnosed with HH at age 23 in January of 1997. It was during the last semester college and probably the darkest and happiest day of my life. Now at age 24 and 19 months into the treatment with hCG, life finally is beginning to make sense. About 10 years too late, but about damn time!!!!!!!! I would just like to thank Mark for putting up this website. It was something that I had thought of putting up several months ago. Unfortunately, since my doctor is not the ideal endrocrinologist, the Internet has been excellent in the amount of resources on HH. I plan on visiting this site quite often from now on.

Carl Anapol July 20, 1999
How do you explain the fact that I am only 5 feet 9 inches tall, supposively have a hand spam only 2 inches longer than normal, and have some smelling ability other than trigeminal. I went through somewhat of a puberty at age 12 and developed pubic hair, a larger penis and testes, and never been impotent. I do have smelling problems and cannot smell gas, or a mothball from a rose. If Dr. Bouloux could see me at no charge at his clinic, I would pay the airfare and domiciary to the UK. I have been diagnosed at two different hospitals with KS using all the standard tests and have been given HRT for 18 years. Starting Wednesday I may try the patch.How well does it work and can you swim or shower with it.

Carl Anapol July 20, 1999
Dr. Bouloux, I presume your answereing this column or at least monitoring it. My case of KS is a little different than most. I went through some puberty at age 12-13 and have normal sized testes and penis. Also I have never been impotent. My smell is deficient but I can smell certain pungent foods like spaghetti in sause and BBQ Ribs. At the same time I could not smell a rose from a moth ball and almost blew my house up with gas, because I could not smell it. My height is normal 5 feet 9 inches and my arms are only 2 inches disapportional, no big deal. They make shirts at all sleeve lenghts, so I do not see how this is too abnormal. My sperm has only a 2-3% mobility untreated but suppossively comes alive with testosterone, not GnRH or FSH or LH. I have been diagnosed at two major hospitals and given all the standard tests. Obviously KS must effect people in varying degrees. Apparently a lot of males have micro penises and small testes, which is not the case with me. I think I will try the patch tommorow and wonder how effective it is, and how you can swim and shower with it. Please answer me on E Mail.

Paul Conibeer August 01, 1999
Hi everybody. I am now on the net so if anyone would like to e-mail me please feel free to do so. Look forward to hearing from you all soon.

Carolyn August 12, 1999
I would like to be able to support my son who has Kallmann's syndrome - he has been on treatment now for 2 years. I am also new on the Internet so not really confident on what to do, but last year a friend let me use her Internet and I passed on your letters to my son which I think helped a lot. I'll leave for now and hope I hear from you soon. Is there anyone in New Zealand who I can talk to ?

Joel Davis-Aldridge August 17, 1999
I am taking 1cc of 200mg per cc every two weeks. I've been doing that amount ever since I was diagnosed with KS 12 yrs ago at the age of 17. I've asked my doctor if it should be increased but he says it's in the normal range. What is the range? And should my level have been altered from my adolescence?

Chad Davidson November 10, 1999
"Wow," many of my questions are finally answered. I am new to this site, and my eyes have been opened enough to see that others have felt my pains as well. I was diagnosed with Kallmann's Syndrome about 9 years ago, but I don't know if this was a correct diagnosis because my sense of smell seem's to be just fine. I don't know if it is my endocrinologist who doesn't seem to find the time to help me out, or if it is my ignorance that holds me back when I get discouraged, but I really would like more answers to my questions. I was wondering if anybody knew of any HH specialists in the Seattle/Tacoma Washington (USA) area? Lastly, I would like to thank the developer of this sight for helping out a group of people, from the sound of our comments, who really needed some answers to some unresolved questions.

Nicole November 16, 1999
I am wondering if anyone can recommend a book or contact for a young boy with anorchia. He has just been trying to come to terms with it. He will most likely start testorone injections soon, and is wanting to talk. I do not have the resources yet to help him and would appreciate some advice. This is my first time on this site and I to am learning more everyday about the NET and benefits for people. Thanks.

Sam December 7, 1999
Are chronic headaches, insomnia, and muscle weakness linked to hypogonadism? My doctor says I have some sort of hormone deficiency, but I don't have my test results back yet. Thanks.

Rachel Gollub December 10, 1999
Hi! I know this is a long shot, but if there are any other women out there with Kallmann's Syndrome, will you drop me a line? I'm the only one I've heard of with it, which is kind of a weird feeling.... Thanks!

Patrick Parker December 17, 1999
I feel certain I suffer from KS. Can anyone please help me find a doctor in the SF bay area who would be able to help me. Thanks in advance...

2000

Janet Pinfield January 3, 2000
Thanks for such an informative web site. I was not diagnosed with Kallmann's until about 5 years ago in my late 40's. I had a history of lack of sense of smell since birth and no periods. I was treated for infertility in my mid 20's with no success. It was treated as a purely gynaecological problem - No suggestion of HRT to combat osteoporosis.

Nobody really got to the source of the problems until a new female doctor joined the practice a few years ago. She suggested that we investigate my medical history more thoroughly. She referred me to an endocrinologist and arranged for a bone scan. The scan revealed that I had advanced osteoporosis and so a high risk of bone fractures. The endocrinologist arranged for an MRI scan to eliminate the possibility of pituitary tumours. He than diagnosed Kallmann's. I was put straight away onto HRT and Didronel to combat osteoporosis. Now I get regular bone scans to monitor the osteoporosis which would otherwise have gone undiagnosed and untreated until I had a fracture! So far so good. No fractures and improving bone density.

As to the infertility - well I have found that it is not essential to have children in order to have a fulfilling life. We had no counselling to enable me or my husband to come to terms with it. We just got on and made the best of our situation. I wish for all those who find out that they have Kallmann's that they come to terms with their problems with a positive mind. There are much worse genetic problems that we could have.

Best wishes to you all.

Joseph January 4, 2000
I was diagnosed with KS about 14 years ago. Ihave a few questions. We tried to have a baby using choronic gonadotrophin injections for a year. I recently took a sperm count and there was nothing. the doctor recommended a biopsy to see if any thing was there? What do you think ? Are there alternative replacement therapy other than injection or the patch?

Dave Ferrer January 6, 2000
WOW, reading all the info available and then reading "Mark's story" really hit home and is quite comforting to finally find some people with this syndrome. Although I don't have Kallmann's syndrome, I do know for sure that I have a type of hypogonadism. I was diagnosed about two years ago and have been getting testosterone injections for about 23 months. I am 20 years old and still waiting for a "normal" life, but things are improving all the time. :) I'd like to be able to talk to other people with this condition(over the internet or face to face) because even after reading Mark's story, I don't feel as alone and isolated as I did 5 minutes ago. Thanks for the great site and I'm sure I'll be checking back quite often.

Sarah Adams January 8, 2000
Thanks for the informative website on Kallmans. It is the first time that I have been able to find information on the syndrome and have my questions answered. Living in a rural area of the United States puts one at a disadvantage for medical care and information. Though I now consider it a compliment to be carded at many establishments and take great amusements at people faces when they see my age. I plan on returning to this site for future reading. My hats off to Mark and his crew for putting up this site.

Ken Morson January 13, 2000
I am 42 years old and was diagnosed with this condition at about 22 years old. I would be very interested in corresponding with others who are suffering from this condition, until I found this site, I wasn't aware of anyone else who had "hypogonadotrophic hypogonadism" ( what a handle. Anyway I look forward to corresponding with anyone who might be interested.

Anonymous January 18, 2000
I would like to thank Mark and all involved in setting up this site. I was diagnosed with Kallmans when I was 14. Since then I have been going through testosterone treatments. I am now 42. It's very comforting to know that there are others out there like me who have gone through all the crap that comes with Kallmans. All the embarassing and sometimes humiliating situations. Having to deal with shower rooms at tender teenage years. People asking me about how something smells and I haven't any clue. Dating in these sex and perfection crazed times. However,what a wonderful time we live in. All those years of wondering if there is anybody out there like me. How they managed to handle things. your lifesaver logo is perfect for this site. It's sites like this that make the internet something wonderful. Again, thank you.

Nihmasi January 25, 2000
Hi, I am nihmasi form India. My age is 24. I am suffering from hypogonadotropic hypogonadism. Three years back only I went for checkup to a doctor in Delhi apoolo hospital.After taking blood test,MRI,Karyotype test she suggested me to take Testosterone once a motnh.I took it for One year.Not much improvement.I again showed to a doctor at chennai.He told me to take Pregnyl 1500 injection thrice a week.I am taking it for almost one year.Good imprvement.Hair growth is there.Not much improvement in my private parts. So i am worried about my future.If anybody can helpme in this pls send a mail to the above mailID.

Powell Chan February 6, 2000
I have a low self esteem and confidence of myself, How can I increse my self esteem and confidence. Are there any new treatment that are more effective(eg. pellets, patch, amd injections) and less side effective for Hypohh members?

A. Patrick February 13, 2000
I am a 25 year old male diagnosed with KS 2 days ago. My life is crazy right now, and I don't know what to expect from anybody. Just wanted to know if there's anyone else like me. thanks.

Miwako Mori February 22, 2000
Hello, everyone. I am a Japanese volunteer, working for a mother of a boy with KS by translating the information on this site into Japanese. We are very thankful for Mark and others who set up this website and also for the great system called Internet. I'm writing this to ask if anyone knows someone in Japan who has KS or HH so that the mother can contact him or her in Japanese language. Unfortunately the mother and her husband cannot speak English, and after knowing about this site, they have come to feel they need to talk about their son's problem, share the feelings they have as parents of a child with this rare disease, etc. I do hope this message will reach the one who would be able to help this Japanese family. Thank you for your time.

Claudia February 27, 2000
I am so relieved to find this site. I was diagnosed with HH, along with my sister, 3 years ago. Our sense of smell is good, though. I am 26, and recently married. I want to have children in the future, so if there is any woman with HH who was able to have a baby, please contact me. Also, I am looking for a good endycrinologist in the east coast, New York metropolitan area. Ah, Thans again for this supporting site. Claudia.

Keela Foster March 3, 2000
This is the best site i have seen for kallmann's! I have already learned more today than I knew when I was diagnosed 8 years ago!

Tom March 7, 2000
Forgive me for not giving my last name.. This is a touchy and embarrissing subject you know.. I am 22 years old and have not yet experienced puberty.. Maybe partial, I don't know.. All I know is that I do have feelings for women, but hey.. this has been this way for the past 10 years of my life.. I feel so alone.. I can't afford treatments.. Just now starting to learn that there are.... All I want is to be normal.. To experiene life, love.. IS THIS SO HARD?? Why does this happen?? WHY ME?

Well, after reading some of these posts, I have decided to get into some specifics.. My voice has yet to change.. Though I have trained my voice to go deeper.. Anything to sound a bit normal.. I only have hair under my arms and I have some pubic hair.. I'm 6' tall and skinny as heck (not anorexic, just high metabolism) - 120 lbs.. And of course, I am attracted to women.. Nothing else.. Hurts to strain my voice going low, but hey.. what can I say?? It hurts so much to see people going on with their lives.. They have no idea how lucky they are.. I'm not depressed as of yet, but it get's harder each day to face.. I want nothing more than to curl up in a ball, and not face the world till I physically grow up.. But you know what?? I force myself out.. I am social.. I see my friends in love.. then I start going on a self pity trip.. And that is the worst time for me.. I've learned not to turn to alcohol at that time.. Learned that lesson quite well.. Also, I've never heard of that disorder or that scientific/medical term (the long one).. Very, very interested in learning more.. Well, I've rambled.. I feel vulnerable.. I am going for now..

Shade March 7, 2000
My son's consultant (an Endocrinologist) says he 'suspects' this boy has hypogonadotrophic hypogonadism which he will confirm at the end of his growth. Very difficult to find out anything about this problem. I had never heard of it until now and obviously am concerned and worried. Where can I get further information? What are the causes? long term effects? Is this in any way associated with short stature? (Which is the reason my son was referred to a consultant in the first place).Is treatment effective? My son is presently being treated with 4 weekly injections of 100mg Sustanon increased from 50mg over the previous year because despite some progress, 'pubertal development had become static'. How is a diagnosis made? What are the criteria? From the little I have so far been able to discover, my son is not in any way typical. He does not have a micropenis, quite the contrary in fact for a boy of his size and age (14) and he has a highly developed sense of smell. I assume there are other criteria which I don't know about. Is a diagnosis based on the size of the testes? If yes, or partly, what is considered normal size and what is abnormal? According to the Doctor, the testes are underdeveloped. Does this mean he will be infertile?

John March 7, 2000
Amazing as it may seem, I wasn't diagnosed until the age of 40 (17 years ago). In my early 20's when my wife and I sought medical help to discover why she never became pregnant, were told I "just had small testicles" which resulted in low sperm count. Even the military doctors failed to see anything 'wrong'. After I was diagnosed I started injections at age 40 and have been injecting myself ever since. I tried the patches but I break out in a rash from the adhesive. I have not suffered any long term side affects from my treatment. I'm willing to communicate and share more details of long term testosterone usage, etc. with anyone interested.

Thomas Hunt, Jr. March 19, 2000
I don't know when this will be posted, but I hope soon.. I just got done reading MARK'S STORY and it has really, really gotten to me.. For you see, I am suffering as well with KS.. I'm a 22 year old male and I feel so alone right now.. I can relate to him being as an INVERT.. all you want to do is isolate yourself.. But you know what, I have learned that if you isolate yourself, that's when the trouble begins.. Name calling?? That's nothing, gettng beat up, now that's another story.. I feel like I'm a 22 year old trapped in a 10 year old's body.. And after reading Mark's Story, oi.. The thought that I may never be able to have kids.. Terrifying.. But you know what?? I am ever so grateful that there I'm not alone with this.. Does anyone know how a person that is almost flat broke can get help for this?? I want to be normal.. I WANT TO GROW UP..

Sandi Gerlach March 26, 2000
My son has had this disease since birth. We have tried to make his life as normal as possible. We are learning more about this yearly, he is 19 now and attending his Dr. appts on his own now. I was very happy to find this site. We live in a rural area and feel very alone. My new concern is a new Dr. order for a MRI because of a possible growth on his pituitary gland. What is this? Very Worried. Please respond. Thanks.

Robert March 26, 2000
I am 28 years old, recently divorced. I am having troubles getting back into the dating scene. I was introduced to my wife or I may have never met anyone. I have been taking hormone shots since I was 17. I am an introvert and hate to go out to try and meet women. My self-esteem is still very low, because I am very self conscious of my small "equipment". Some say size does not matter, but to me it is all I think about. How can I get past this and meet the perfect woman? Would love to correspond with anyone who might be interested in sharing stories. Thanks.

2005

Geoff
March 12, 2005
hello from down under, my name is geoff i have male hypogonadism as a result of undescended testes. unfortunately wasn't started on hrt until aged 28 by then had developed osteopenia and gynocamastia which i had removed in 1997. it's quite a emotional roller coaster having hypogonadism i have never spoke to anyone in a similar position to me because i didn't know something like this existed. iv'e been on testosterone therapy for 9yrs and it was like my whole body was transformed into a ball of muscle including deepening of my voice and a lot of hair growth. i started on injections for 2yrs but they were to painfull, then andriol caps but the liver was destroying them. then patches which rarely stuck because of increased hair growth, so currently i am on implants 800mg every three months quite a large dose but they think its right for me because of my size 6ft5 inches and 110 kg. i do get abit sick of the scar tissue in my abdomen therefore i cant wait until australia will allow the new androgel to be available or maybe i could try a cream. i would certainly welcome any advice from anyone re alternative hrt therapy. hope i havent raved on to much hope to hear from someone soon regards.

geoff australia.

2005

Steve
April 7, 2005
Steve Does anyone know of any organisation in Melbourne Australia that discusses, studies, or maybe has a support group. IHH has affected most of my life and I was curious if there was anyone local.

Thomas
April 13, 2005
Thomas praying4revival@yahoo.com My last post was made in March of 2000. It's the one with the excite email account..(huh, I thought I had an excite account, guess I shoulda followed up on that, eh?) I'll be 28 years old in September. I'm still skinny as heck, no treatment as of yet. Mainly due to financial issues and what I learned about local treatment. It goes into research that I do not allow in any way, shape or form. (let's just say I'm conservative) I am dealing with depression and for the past 6 years this January, I've been isolated from the outside world (except my dentist..."HAD" to get that taken care of). I'm at the point where I'm sick of society. At least on the net, things aren't that personal. Besides, it beats getting anxiety and panic attacks from being out in public or trying to talk on the phone. What sent me into isolation was a bad experience...A group of guys approached me on my way home from work and though I knew they weren't gay, their actions spoke louder than their words...That and the threats of being beat up yet again for being different. I freaked out and had a breakdown. I didn't lash out in anger, no...No, I just broke down emotionally...and I've been dealing with that since then. Am I bitter? Yes. Am I POBAR? Oh yeah...But what can you do when you don't have that many options left? Me, I read, I write poetry, I even write medium-long role playing stories. I also raise ducks, chickens, and geese. I now live in my parent's old place (they live next door in my grandparent's old place). I keep things tidy, I feed the animals, I get a roof over my head and all the privacy I want. To be honest, I really don't miss being out around people. Things are a lot more tranquil. I don't get on the puter that much, I'm usually found outside or inside writing/reading.

Nina
April 16, 2005
Nina Davies. My son is 17 years. He has had one appointment with the endocrinologist(only saw SHO). He has not developed puberty and has always complained he could not smell. He had a blood test and the DR said his Testosterone was very low. He is to have a karotype blood test next week. The GP has been asked to presribe 40mg Testosterone capsules for 6months. We have been asked to see the endocrinologist in 6 months. I have made an appointment for 3 months as we have lots of questions we need to ask.William does not appear to be phased by it. I am very upset, but my son is unaware of this. My main concern is getting the correct treatment as soon as a confirmed diagnosis is made. Can you tell me if William is likely to catch up growth wise.He is 5' 7, but all the male relatives both sides are 6' and over. I am 5' 7'. William is the lovelyest guy you could meet, but lacks confidence. He has always had poor coordination, and as he grew up problems with social skills and concentration. He has an above average IQ. Could this be associated with the above. Many thanks for listening Nina

Jose
April 17, 2005
jose Ramon Fernandez Loera jrfl79@yahoo.com Hi! I NEED INFORMATION ABOUT KALLMANN�S SYNDROME, I HAVE THIS, AND LIVE IN MEXICO. I HOPE YOUR ANSWER�S. THANK�S FOR YOU ATENTION.
...I have tried to reply to your e-mail but it does not seem to work. I know of somebody else in Mexico with Kallmann's who would be happy to talk to you and help answer any questions. If you write back with your correct e-mail address I will pass it on to him so you can contact each other.

Mick
April 15, 2005
Mick.Page updated for the Melbourne guys. Click here.

Tom
June 8, 2005
I am 22 years old and believe i may have this condition. I have been using TRT for a while now and things are progressing. Am i likely never to have facial hair, or will that come with time???

Ameliede
June 17, 2005
Being 65, I have given up on fertility, but I realize now that most of my life I retained some hope that science would give me a sense of smell. Now I have lost hope, and the thought of dying without ever experiencing that sense that has so often stimulated memory, inspired artists and writers, thrilled lovers, fills me with sadness. Are there any web sites, discussion groups, etc., specializing in anosmia?

S.H.
June 19, 2005
I'm hoping that you can advise me here I can get sympathetic and reasonably priced treatment for hypogonadism. I was diagnosed with it aged 17; I'm now 48. Its always been difficult for me to talk about it. Neither of my parents seemed to think I had a right to privacy on the matter. The endocrinologist (for all I know you've heard of him, though I expect he's retired � Hartog was the name: God, I've wanted to name and shame him for years) thought it acceptable to carry out an intimate physical examination with an audience of medical students, most of them around my age, and including several women. The same consultant also pressured me to take part in one of his colleague's drug trials, not for my benefit, but for some article he was writing to further his career. I want treatment for cosmetic reasons really. I was recently humiliated by a drunken yob who told me he couldn't tell if I was a man or a woman. C**p like this gives me a sense of solidarity with people who I couldn't otherwise be bothered with, for I am very much the conventional male. The incident was one of several over the years. They've made me angry, and driven me to self destructive practices, principally binge smoking and comfort buying. I'd like to know if my hormone deficiency has any effect on my intellectual performance. I'm pretty sure the capacity for logic and problem solving is impaired. I had to take O Level maths three times to pass it; also I was often told how full of good interesting ideas my undergraduate essays were, but how they always lacked structure. As I've got older, concentration and memory are not what they were, and I don't think its just due to ageing. I desperately need a postgraduate diploma to get on in my chosen profession, but I don't have the concentration or stamina. None of this means I think HRT is a panacea. Please don't write back advising me to speak to my GP: I don't have one, because they're all so dire in my part of the West Midlands I hope you won't mind if I withhold my name at this stage.

Charlotte
July 1, 2005
Charlotte Cook hi, my name is Charlotte, i have visited this site a few times, but it doesnt appear to be updated, but helpful none the less! i was diagnosed with Hypogonadotrophic hypogonadism when i was just 18, i initally went to the doctors aged 17 because i still had not had any sign of my periods, and had some but little pubertal development. i have been on HRT for the last 8yrs, though not constant due to my own forgetfulness! HRT has helped as it makes me feel 'normal' when i menstruate. one thing i notice when looking up sites on the internet is that most of the results i find seem to be about men with HH, does this mean its rare for women to have it? i'd be intersted to talk to other female sufferer's. I have a sense of smell, which i guess rules out Kallmans syndrome. the only thing i continue to find difficult is the inabillity to have children without hospital treatment. when i decide to start a family i will have to either pay �5000 or wait 5yrs for one cycle of IVF, which is not a good prospect. this site is very helpful, keep up the good work! Charlotte Cook

Stephen
July 18, 2005
Hello. I am writing from Canada. Can you recommend someone that I can talk to regarding fertility treatments with my condition. I have tried the GnRH pump, but would like to speak or write to someone who not only deals with infertility but with hypogonadotrophic hypogonadism. Thanks so much

Tiny
July 22, 2005
Hi, I am Tiny and have a daughter who has Kallmann's syndrome. I would like to talk to people who have this too. Greetings Tiny

Hani Almajali
July 24, 2005
Thank you for this new update. I am one who suffer from this disease. I visit this site many times a week and I get very valuable information, in addition to my experience through my treatment Thank you

Tracy Walters
July 29, 2005
My name is Tracy Walters. I have HH. I am 39 years old and have a daughter who is 3. If anyone needs advise on how to get pregnant I can help! It doesn't need to cost anything i got all my treatment on the NHS. Also all prescriptions are free for HH sufferers ask your GP - Tell him/her that all 'hypo...' related illnesses are exempt. Charlotte I read your note. please get in touch x

Tracy
August 1, 2005
Tracy Walters. I was told by the Elizabeth Garrett Anderson hospital, Huntley Street, London that they have had 35 female patients with HH in 10 years from all across the UK, so it must be a very rare condition. They helped two thirds of these patients get pregnant, the other third had additional problems. It is important that you push your Obstetrician/Gynecologist to refer you to this hospital as they will see anyone in the UK. I was given the GNRH pump which was reasonably effective but eventually the winning formula for me was to inject menotrophin (trade names Menopure & Menogon) daily.

I needed 5 ampoules a day. I then needed to have scans three times a week to check on the follicular development and the womb lining (endometrial thickness) when I had a follicle measuring about 19mm I was given an injection to release it (trade name Pregnol & Profasi) then I had IUI (inter-uterine insemination) although in theory I could have had normal intercourse. I also took a further injection of Pregnol / Profasi (5,000) five days after IUI and another two days after that but reduced to (2,500). Then I was pregnant! The rest of the pregnancy was totally normal. (This does make it sound so simple it took me 11 years to get this far, but hopefully it will help you to reduce the wait).

It is important to have a laparoscopy to ensure all your girly bits are there and also the test that shows whether your tubes are blocked (can't remember the proper name) If you are nor getting adequate help from your GP/Consultant be pushy; you are special and they should treat you as such.

P.S a lot of the fertility investigations specific to your needs can be sorted out before you meet Mr. Right; so when you do find him you can start trying for a baby straight away! I will be checking up on this site every month or so, if anyone has any questions I will be happy to try and help. xxxxxxxxxxxxxxxxxxxxxxx

Thomas
August 6, 2005
Charlotte, you could have Idiopathic Hypogonadotrophic Hypogonadism. As I've learned through the years, there are many forms of KS. Some have a sense of smell, some have partial, and some do not. Some people end up with longer arms than their height, some end up short, some have metabolism problems, and some don't.

Michael
August 6, 2005
I am so frustrated because of this. I'm almost 17 years of age now and I suppose I hit puberty about the age of 14/15. However, although I have developed pubic hair and body hair, my penis is still tiny, almost as small as it was before I hit puberty. Its is so distressing and I am beginning to think t here must be something wrong as I have a tiny penis but I have matured everywhere else. It has come to the time that my girlfriend and I wish to have together, however, with my small penis this is impossible and it is too embarrassing for me to tell her the truth. I just want a normal sized penis. If anyone can help me in any shape or form on this matter then I would be most appreciative of anyone's help and or guidance. If it would be possible for anyone to please email I with any help (weemee4eva@hotmail.com)

Thank you ahead of any help and guidance offered!

Katie
August 12, 2005
Wow, what a great site..... Isn't it weird finding others with the same condition after being isolated for so long? I have yet to be diagnosed, but suffer from complete anosmia and primary amenorrhea. I can't tell you how many doctors I've seen who have thrown birth control pills my way and tell me it's just ovarian cysts. I'm sorry for those of you who have been persecuted and tormented over the years. You deserve so much better, and there ARE people who understand.

Durin
August 19, 2005
The Forum does not get a lot of visitors but I thought I should post my situation anyway. I have a problem with my pituitary gland that was a result of Rh factor in utero. I have growth hormone deficiency, adrenal deficiency, and hypogonadal hormone insufficiency. Basically my pituitary gland was damaged and it doesn't make any of these hormones that I need.

I am currently 33 years old and I am married and have a son. My problems were diagnosed early on and I have always had the medical treatments necessary. Despite my medical problems my life has been full and fulfilling. It was hard during puberty, even after I started taking testosterone. I am naturally geeky enough without the "equipment" problems I had. Every Guy I knew had "balls", I did not. I would avoid a communal shower like the plague. If I had to get undressed before others I would change in and out of my pants very quickly. Usually with a shirt hanging over things if possible. If I did have to do the communal shower thing I would go very early or very late at night to do so. I got picked on at school, whether this was HH related or my natural geekyness I don't know. I would have pads put in my locker and things like that.

Somehow there has to be more resources for people like us. My endocrinologist is great and he has done a superb job for me. I still go to the same one I went to when I was a kid. But there was never any counseling about the mental and emotional ramifications of my problem. I suppose everything worked out for the best for me, I have a good life but it is quite an obstacle to hurdle if you have this problem.

Mich
August 16, 2005
Tengo 30 anos y tengo el sindrome de kallman, estoy por empezar un proceso de tratamiento para envarazarme atravez de superovulation strainght injectable stimulation con FSP que probabilidades tengo de embarazarme ya que llevo mucho tiempo tomando estrogenos y creo que todo me ha dado recultado pero es la primera vez que voy a intentar un tratamiento para embarazarme y que riesogs puedo tener

Michelle
August 23, 2005
Hi. I have Kallmann's and through fertility treatment am due to have my first child in 2 weeks. I would love to hear from any woman out there who has Kallmann's and has given birth. Would be great to know if the right hormones kicked in at the right time and whether they were able to give birth naturally or a c/section was req'd. My GnRH is low so I don't produce LH or FSH and therefore my oestrogen and progesterone are low.

Rose
August 25, 2005
My 17 year old son has KS. Is there a link between KS and homosexuality? He is also gay.

Steffan
August 26, 2005
Aged 17 I was diagnosed with Kallmann's Syndrome with anosmia. Tests revealed my physical age was 14 & 3 months. A year later I was sorted, physically anyway, but I still take Pregnyl every 5 days to keep my levels up. It's amazing to be able to read so many other people with KS have the same fears, doubts and symptoms as yourself. For this reason alone I thank the existence of the internet.

Anyway, I was lucky: both my parents used to work for Organon, the producer of Pregnyl. My former GP was a great guy and the endocrinologist I saw at the time was one of the world's leading experts on KS before he retired. Thankfully he imparted his knowledge and I still see his successor Dr Vanderschueren about once a year. He's based in Leuven, Belgium and I cannot recommend him highly enough. For one, I know he was instrumental in teaching NHS staff about KS in London.

The only downside is (as the previous poster mentions) there is no real aftercare regarding the emotional consequences. What I'd like to know is, does anyone know how many people in London, or the UK are registered with KS? Is KS still as rare as initially thought? Feel free to email me

Carina
4th September 2005
I'm 23 and was diagnosed with Kallmann's when I was 15. My brother, 19, also was diagnosed with Kallmann's sydrome - What are the chances of that? Does that mean both our parents were cariers? Also does anyone know about a link between anixety, panic attacks and kallmanns? Whether its some emotional side effect of hormones? Because ever since I was about 13 I've been depressed.

Anthony
23rd September 2005
My question is this. My wife is currently 5 1/2 months pregnant with our son. I have been diagnosed with Kallman Syndrome when I was 10 years old. Would my son have a chance in inheriting this disease or is this is only inheritable from the mother's X chromosome. Meaning he would be clear from getting this from me since I would be providing only the Y chromosome and not the X chromosome (unless my wife was carrying a girl meaning she would inherit an X from each of us). Thanks, A Quinn

No name supplied.
3rd October 2005
Hi there i saw your infomation about need ing someone for the website. I was actually in the middle of setting up a website myself to encourage others to share there experiences on kallmanns syndrome.-

I am a 26 year old female and was diagnosed with kallmanns syndrom when i was about 15 or 16 in 94/95. Needless to say i didnt deal with kallmanns syndrom in the right way at all. I shut myself off from others and refused to accept the fact. The more i tried to run away the more and more depressed i got. I was trying to run away but everywhere i went i couldnt shake off kallmanns it would be with me everywhere i went.

Any way i was trying to set up a site to try sand encourage people not to do what i done and deal with it in the wrong way and to try and let other who have just been diagnosed to escape those feelings from dealing with it in the wrong way. I feel that maybe i could help you out and was wondering what it involves. Please get back to me with details. Ill look forward to hearing from you.
I still to today havent came to terms with kallmanns and maybe through me trying to help others i may in turn come the face up and accept kallmanns myself. I also was wondering about the tv documentary that is mentioned on the kallamnns site and wondering if it would be possible to get my hands on a copy. Could you advise me on where i could get this?

When i was diagnosed with kallmanns syndrom i was the first or second case that my professor had saw in the hospital it was the royal victoria in belfast. There was no help for me at that time until your book was released and then there was support groups but at that time i was refusing to accept the fact.I wanted to hide everything that reminded me of this condition. I even stopped taking my pills because it reminded me daily of my condition. I am sure you know only too well the feelings i had and still do at times.

The professor had asked me if he could use my example for students etc and i got angry as i thought he was invading my privacy. I know now thats were i went wrong and that this could have possibly saved me alot of heartache trying to deal with it in my own way which i now no was the wrong way. Please do get back to me and let me know what is involved and if i could be of any assistance to you.