Absent or incomplete puberty - not a “late bloomer”.

I did not start puberty on time. In fact I never started puberty. I had no sense of smell and poor hearing, which at the time were linked to the fact I did not start puberty.

Doctors told me I was just a “late bloomer” and should just wait and see. I had to wait until I was 23 years old before I was correctly diagnosed with a condition called Kallmann syndrome.

The full name of the condition is hypogonadotropic hypogonadism (HH).

When the condition occurs with a lack of sense of smell, it is known as Kallmann syndrome.

The condition affects both males and females, but is more often diagnosed in males.

The condition is normally present from birth (congenital) but rarer forms of HH can occur later in life after a normal puberty.

The true incidence of Kallmann syndrome / CHH is unknown but estimates range from:

• 1 in 10,000 - 1 in 30,000 for males

• 1 in 40,000 - 1 in 125,000 for females

The primary symptom is a failure to start or fully complete puberty and infertility but there are additional symptoms that only occur in certain cases. These can include:

• Anosmia (Kallmann syndrome only)

• Poor hearing

• Cleft lip

• Missing teeth

• Mirror movements of the hands

• Fused fingers or toes

• Scoliosis

• Undescended testicles

The underlying cause of the condition is a failure in the production or action of a hormone produced by the hypothalamus that controls puberty and reproduction via hormones known as gonadotropins called LH and FSH that should be produced by the pituitary gland.