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Information on Kallmann syndrome – Delayed or absent puberty.

December 11, 2016

I do not hide the fact I have a condition called Kallmann syndrome and am always keen to talk about it to anybody who is interested. It can be an embarrassing condition to talk about but I feel that I am in the position that I can talk about it freely and openly.

My major concern is the early diagnosis and treatment of the condition. I was late diagnosed at 23 which has affected my life in certain ways. However early diagnosis and treatment can make so much difference with this disorder. Unlike other rare conditions there is no pain associated with the condition and no loss of life expectancy. The treatment for the condition is fairly straightforward, apart from the fertility treatments which do raise problems.

Those patients I talk to who seem to handle the condition best are those who were diagnosed early and were treated early. More importantly they received information on the condition. I can not prove this through a scientific study but only through personal experience and from talking and meeting with many other fellow patients. The earlier the diagnosis and treatment is, the easier it is to cope with the condition. The isolation of thinking you are the only person not going through puberty and being labelled as a “late starter” or “late bloomer” well into in the late teenage years and beyond can be a difficult thing to overcome.

This has led me to be very vocal about the condition and to mention it in as many social media outlets and websites as I can.

I enjoy the interaction I have with fellow patients and always enjoy meeting and talking with them.

My overall aim is to get the condition mentioned in some form of mainstream media or social network platform. The condition is most certainly under diagnosed (especially in women) and I want to try to help people get an early diagnosis and treatment.

I have created a Facebook information page:

Kallmann syndrome on Facebook

Thank you for reading.

  1. Thomas permalink

    Once you started treatment, did it help with penile growth? And how long before you noticed anyou changes?

    • No, not really in my case. I was quite late in starting treatment (age 24) so I did not have much penile growth at all. As a general rule the earlier men with Kallmann syndrome start treatment the more penile growth they can get and men with Kallmann syndrome show the same variation in lengths that you would have in any group of men.

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