Kallmann's Syndrome is not a very well known condition, even in the medical community.
The actual incidence is difficult to know for certain but estimates are in the range of 1 in 10,000 for men and 1 in 50,000 for women.
On one hand it is a very mild condition to have, there is no change in life expectancy and no pain associated with having the condition. The only big thing to watch out for is the increased risk of developing osteoporosis, or "brittle bones" due to the low levels of circulating sex hormones. The lack of sense of smell may get noticed from time to time and may cause a few embarrassing or awkward situations during life.
However the psychological damage of not going through puberty at the same time as you peer group, or even not all, can be immense. Just how damaging will depend from individual to individual and will be affected by age of diagnosis / treatment, knowledge of the condition and family & friends.
There are two aspects of not going through puberty that have to be considered. One is the feeling of being physically different from the people around you and the other is the fact that you will be infertile without treatment. Each of these may be more important than the other depending if you are male or female or at what stage of life you are at.
A web blog about my life and a rare hormonal condition called Kallmann syndrome. It is a condition which results in a failure to enter puberty and a total lack of smell. It is a form of hypogonadotrophic hypogonadism
About Me
- Neil Smith
- Worcester, Midlands, United Kingdom
10 comments:
I came here from a link but where is this going? I know zero about blogs
Thanks for this. You are right the psychological damage is extraordinary and in my case totally ignored by family, teachers and medical profession alike, but it was a long time ago. I have always felt apart from the human race; an observer of it, not part of it. However I do not grumble it has been a happy enough time all things considered and the much maligned National Health Service has picked up the tab for over 46 years. I am male and now 61 years old; still look younger than I should and with a full head of hair - now there's a blessing.
Until I found the HH web site I thought I was the only man in the world with this condition; I didnt even know it had a name; and my mother has gone through her life thinking it was something she had done wrong. Now I begin to realise I have a wealth of useful experience - but can still choke up if it comes to talking about it.
Sex is a big issue among the males afflicted with Kallmann's.
Simply put, some of us have a really small penis (medical term: mircopenis). Growing up and listen to women either mercilessly dismiss/mock or bitterly complain about guys with small dicks makes you feel unwanted and incapable of having a normal relationship.
Blimey, thanks for that. I'm doing a research assignment on Kallmans and there is fuck all anywhere I've looked. This site has been a real help. Cheers for that.
ROCK AlwAYS!
Asajii
I am 15 year old girl, and have a boyfriend and find it hard to be attracted to him in the way that a couple should be. People have even asked me why I look so young and I have no clue what to say. Really, I just act like the question was never asked or abruptly change the subject. I try to act way more mature to balance myself out, and I guess it works some. Having Anosmia and Kallmann Syndrome can be hard to live with, but luckily I will begin treatments when I turn 16 which isn't too far from now. My sister has Kallmanns too but I like to look around on the web once in a while to know that I am not the only one in the world that has this condition. It helps me feel slightly less different from everyone else.
Nice blog. I have Kallmann's syndrome also and i have a blog too.
My brother and I both have Kallmann's Syndrome. We live in the NYC area. We were diagnosed early (before we entered puberty) and were treated with Testosterone. I currently take 2 ccs every three weeks. We use a very good physician at Winthrop University Hospital in Mineola, NY, Dr. Mariano Castro-Magana. He has extensive experience in this field.
BTW, my brother was treated with fertility medication and currently has two sets of twins.
Sex in the biggest issues for a man with Kallmann, that's for sure.
i am 19, and was diagnosed with ks very early in my life. it is interesting to read these comments, i too felt like only an observer of the world, not part of it. physically i look about sixteen, i dont complain though. it gets depressing sometimes, but really it could be much worse. it bothers me alot that there isnt really too much information on the subject, and actually the only part about having KS that sucks is the fact that my girlfriend really wants to have kids with me, and well, she would make beautiful babies (one day) but she puts so much pressure on me like i have a choice in the matter. people dont really understand it, though she does try. crossing my fingers to one day be a daddy....
Here is a link to more information about the genetics of Kallmann Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Kallmann_Syndrome/684. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
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