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How common is Kallmann syndrome.

October 18, 2011

Kallmann syndrome & hypogonadotrophic hypogonadism has a probable incidence for males of 1 in 4,000 adults.

So in the UK with an adult population of around 50 million there should be 12,500 people with KS / HH in the UK.

It is probably a fair statement to say it is an under diagnosed condition with people not wishing to admit to a lack of puberty developement.

Even when people do see GP’s a common response is “wait and see” and “late developer” which are terms that should never be used to describe a 15-year-old.

  1. Tracey permalink

    I think the comments my GP/specialist used when I was younger such as ‘late developer’ ‘this is abnormal’ etc made dealing with my HH very difficult. This has been very emotionally damaging and I have always suffered with self esteem with regards to body confidence because of this.

  2. Tracy I was just diagnosed at 44 yrs old!My mom took me to gynocologist and pediatricians because I had periods only sporadically and practically no breast development until i was about 20,they never even checked my pituatary!Just my thyroid.I was never able to concieve and never looked into fertilitiy treatments because I have stepchildren but it would have been quite an ordeal.I think more people have this syndrome than is recognized.Doctors need to educate themselves a little more.

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