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It could be worse…

February 15, 2011

Kallmann syndrome and HH is not a very nice condition to have,  there is not much disputing that.  Some of the problems with Kallmann syndrome are psychological and go unnoticed by other people and it is not a very easy condition to have to explain to other people about. The majority of people I know with Kallmann syndrome / HH very rarely talk about it with anybody else.

However put it against some other far more common medical conditions, it does come out well.

With Kallmann syndrome / HH there is:

No reduction in life expectancy.

No serious disease association, except osteoporosis if left untreated.

No physical pain / morbidity.

Treatments are fairly straightforward. Some of the male HRT treatments now involve an injection or implant once every 6 months.

While testosterone is an important hormone for many functions around the body, it is not a vital one for life. A person can live with low testosterone for years.

 If you compare this against somebody with Type I diabetes who has to inject daily and faces serious health issues later in life, even when properly controlled, living with Kallmann syndrome comes out favourably.

I have had conversations with a Type I diabetic and while we face similar issues, neither of us would want to swap conditions.

Kallmann syndrome or HH can be very difficult to cope with, but a lot of the problems come from non-diagnosis or non-treatment. The people who are diagnosed & treated early seem to cope with having Kallmann syndrome than those of us who were not diagnosed until our 20’s.

  1. catherine permalink

    it could be worse….where i appreciate you have not hade a so called “normal” life with kallman’s it seems a little easy to think It could be worse…
    as a female I was unable to have penetrative sex and was not diagnosed till my late 20s. by which time I was sick of rude gynecologist with students intow being examined prodded & questioned, blood tests, ct & cat scans and ultrasounds.

    Even the doctors performing my laparoscopy were lacking in any understanding of how scared I was to be in hospital and failed to put me at ease before they put me under, I feel know this panic was due to my lack of maturity and understanding. I felt inadequate and like a freak. I took HRT as I did not want children, I did not want to pass this vile thing on to children. but the new hormones awoke other feelings which changed my mind. because of these new feelings and because I wanted to grow boobs and at least look a little more female I was put on the pill. I am very horny but like you only had sex once which was boring mainly I think I was with the wrong person. I am now over 40 & too old to get IVF and do not earn enough to pay for it, I am too old to meet someone and have a family and natural way would not be possible.

    I do not see any purpose to life. I hate the way my lack of understanding & treatment has effected my state of mind, work, friendships, depression. As the people I work with are becoming ever younger I feel worse as I look so younge and feel very immature. people think i am care free and shrug things off when really I just forget something simple like people being offhand or nasty with me but then another part of my brain remembers at a later time and eats away at me, from this males and females seem to walk over me. i am becoming more and more aware of my younge attitude and own immaturity.Current this feeling is making me cry all the time, knowing I am 1 of about 50 or 70,000 females doesn’t help, I feel different & odd and remember feeling like this when I was in primary school (under 10yrs old). speaking of which I remember when I was under 10 my brother allways made a song and dance in the car when someone trumped, I would try to join in but this was the first time I realised I could not smell, I kept quiet with fear of being mocked, eventually in my late 20s I realised I have hyposmia and when I told my brother he thought I was making it up.

    I am sorry if this sounds harsh but it feels like Kallmans has runined my life so far and I dont see things improving.
    I’d love to be 18 again and be brave enough to admit to my doctor the problems I was having sexually and push for help, some of us in this world are not pushy enough.

    • Chris permalink

      I would love to speak more to you. As a male with Kallmann Syndome I always felt that my sexual inferiority was the worse part. Having a micropenis and unable to have children seemed like I was nothing but a freak. A natural eunuch. I still suffer from the effects and have a hard time dealing with it. I just turned 40 last year and feel more alone than ever.

      • You can contact me any time. I talk to many fellow patients with KS / CHH from around the world. Some have coped with this condition better than others. It can be an isolating condition at times, especially if you do not have the chance to meet or talk to fellow patients.

        Most of the patients I talk to do have normal relationships and some have children but it does vary a lot since we do not always have the same severity of symptoms and we could have been diagnosed and treated at different stages of our lives.

  2. Lottie Eckhart permalink

    I am an adult female with Kalmanns Syndrome too. I have a milder version of it than some. I was born anosmic and started to figure that out when I was five. I always figured I was slow to figure out how to smell or was just not paying close enough attention. Plus, my familly never quite believed I could not smell. My family knows I can’t smell, and still they will say, wow, can you smell that? They just don’t get it. I am married, and my husband actually gets that I can’t smell. I do look sexually developed, but a little younger. I never ovulated. We never did have kids. 1/70,000 makes us special I guess. Looking youngish isn’t a bad thing. And there is no reason we shouldn’t live into old age. This does’t ruin our lives, it isn’t a good thing though. But, like everyone ese we just have to make the best of it.

  3. Ema permalink

    Please how do I contact you. We need to talk. Thanks.

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