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Random thoughts…

February 19, 2011

I might have said earlier that Kallmann syndrome or hypogonadotrophic hypogonadism(HH) is not the worst condition to have, and I still stand by that statement.

However one of the worse things about having Kallmann syndrome or HH is that it is impossible for anybody without the condition to know how much it can affect you on an emotional / psychological level. However much friends and family want to understand or help it is very difficult, if not impossible for anybody else to understand what it is like to have the condition. This could be said of other conditions I know but I think there is something unique about Kallmann syndrome that affects such a basic part of growing up.

Since the teenage years are the crunch years both for physical and emotional change any disruption from the normal expected pattern can have a huge effect in later life. For some people with Kallmann syndrome and HH there is a huge feeling of being left behind physically in their teenage years.

People cope with this in different ways, but some people with Kallmann syndrome remain shy, insecure and socially withdrawn, even when to the outside world they look totally “normal” and have nothing wrong with them.

I talk to people with Kallmann syndrome in steady, loving relationships and they still feel insecure and self-conscious at times. It can be very difficult sometimes for a person with Kallmann syndrome to take the risk of letting somebody else get that close to them. When they do they find it very rewarding and wonder why they waited so long, but it can take such an effort to overcome some of the invisible hurdles you get with living with Kallmann syndrome or HH.

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