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Meeting other people with Kallmann syndrome

January 28, 2011

One aspect of having Kallmann syndrome that is most difficult for some people to live with is the fact that since it is such a rare condition the majority of people with Kallmann syndrome have never met anybody else with the condition, let alone talked to somebody.

I like meeting other people with Kallmann syndrome and spend a lot of time talking on-line to people and answering questions by e-mail when I can.

I think people find it very therapeutic to be able to put a name to the condition and to realise they are not the only person in the world with this condition. The ability to talk to others with the same condition can help people come to terms with some of the issues associated with having Kallmann syndrome.

I have never regretted meeting a new person with Kallmann syndrome. Sometimes it makes it easier to ask questions with somebody who is going through the same issues as you.

It also allows a sense of perspective to be reached seeing how different people cope with different aspects of the condition.

  1. I agree 100% I have met 1 person with KS and would be happy to meet others (though not in my own area). The feeling of no longer being alone, and sharing similar life experiences, knowing that someone else knows how it feels is very therapeutic! Reading other peoples personal stories, often traumatic to the point of near tragedy leads me to think that it can only be a good thing to have confidential contact and help each other if we can.

  2. ced permalink

    Any male with treatment for kallmann syndrome have any luck with fathering kids?

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