Discussions By Condition: Medical Stories

Kallman's Syndrome

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • May 20, 2009
  • 00:55 AM

Hi,

I've been looking for ages about this syndrome but it's very rare especially in females so it is difficult to find anyone to ask about this syndrome.

I was just diagnosed with this at the age of 17/18 years old and have now been living with it for about years (I'm 21 now). I just want to know is there anyone else who has been living with this for longer. And how has this affected you, like have you been able to have children, what about brittle bones, etc.

It would be great to hear from you. Many thanks.

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3 Replies:

  • I have this.. I am 24 and was just diagnosed! Please reply, I have never met anyone with this and cannot find much information about it.
    Anonymous 42789 Replies Flag this Response
  • I am a female, now 55 years old, and was diagnosed with Kallman's Syndrome at age 19. I am happy to tell you that I have two healthy, beautiful biological daughters. (They do not have any symptoms of Kallman's.) It took the knowledge of a fabulous physician, but both of my conceptions resulted in "textbook" pregnancies and deliveries. I am taking Fosamax after being diagnosed with osteopenia several years ago. Thanks to that treatment and exercise, it has not advanced to osteoporosis.There was little information available at the time I was diagnosed and I would have loved to have had a conversation with any other female that had Kallman's Syndrome.Let me know what questions you have and I'll gladly answer them as fully and honestly as I can from my personal experience.
    Anonymous 42789 Replies
    • September 24, 2009
    • 00:32 AM
    • 0
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  • Hi, just wondering if you were having the same issues as me. I never got my period and at 19 I was put on HRT and got my period a few months later. I've been told that it looks like I have Kalmann's syndrome. I'm 24 now and visit my gyne twice a year. I never get much information when I ask him questions and he said he doesn't see any reason why I wouldn't be able to conceive with a few hormonal injections. So I was put on the pill instead of HRT incase I get pregnant. Whenever I google kalmanns syndrome its about men and women without sex organs. I have everything I should have. I started puberty at about 10 but I stopped developing at about 13. When I went on HRT, puberty continued. Were you on HRT yourself at my age? and did you get much questions answered by your gynecologist?I am a female, now 55 years old, and was diagnosed with Kallman's Syndrome at age 19. I am happy to tell you that I have two healthy, beautiful biological daughters. (They do not have any symptoms of Kallman's.) It took the knowledge of a fabulous physician, but both of my conceptions resulted in "textbook" pregnancies and deliveries. I am taking Fosamax after being diagnosed with osteopenia several years ago. Thanks to that treatment and exercise, it has not advanced to osteoporosis.There was little information available at the time I was diagnosed and I would have loved to have had a conversation with any other female that had Kallman's Syndrome.Let me know what questions you have and I'll gladly answer them as fully and honestly as I can from my personal experience.
    Anonymous 42789 Replies Flag this Response
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