Kallmann’s syndrome is an extremely rare condition and does require specialist diagnosis. It is not unknown to meet doctors who have not heard of the condition.

Frequently teenagers starting puberty late are dismissed as “late developers” and told to wait and see. In a lot of cases this is fine if they then enter puberty a few months later but if somebody has Kallmann syndrome they will never enter puberty without treatment.

A person with delayed puberty will eventually start and complete puberty. A person with Kallmann syndrome will not start puberty without the correct treatment.

A delay of puberty on its own is not normally enough for a diagnosis of Kallmann syndrome. However there are a number of other associated symptoms that can help point towards a diagnosis of Kallmann syndrome.

Sometimes these associated symptoms can only be picked up by doctors with specialist knowledge of hormonal disorders known as an endocrinologist.