Monday, July 15, 2013

Kallmann Syndrome Information page on Facebook.

I am in the process of creating a new information page on Facebook for Kallmann Syndrome and Hypogonadotropic Hypogonadism.

It is work in process at the moment but I hope to be able to post information that might be helpful to fellow patients and news of any upcoming meetings or recent medical papers.

Facebook Information page for Kallmann Syndrome.

Sunday, July 07, 2013

Kallmann syndrome & anosmia.

Anosmia or the lack of sense of smell is an important symptom in Kallmann syndrome as it is the one symptom that can be noticed well before the age puberty is due.

Anosmia accompanied by pubertal delay should alert doctors to the potential of a case of Kallmann syndrome.

Anosmia is only found in patients with Kallmann syndrome.

An absence of puberty and no sense of smell might not seem related at first. They are linked because the part of the brain that controls smell (olfactory bulb) and the part of the brain that controls the initiation of puberty (hypothalamus) are located very close together. During the very early development of the foetal brain any problem in the development of the structure of the olfactory bulb can prevent a the part of the hypothalamus that controls puberty from working correctly later in life.

Around 50% of cases of congenital hypogonadotropic hypogonadism (CHH) occur with a normal sense of smell. The other 50% of cases have anosmia or hyposmia (reduced sense of smell), it is these cases that can also be termed Kallmann syndrome.

Since patients with Kallmann syndrome have had no sense of smell all their lives some patients do not realise how important the sense of smell can be.

There are issues such as fire & gas safety, food wastage, personal hygiene & body odour that can be easily overlooked, especially if a person lives by themselves.

There is an excellent support group for people with all forms of anosmia, called Fifth Sense. Here is a link to their website:

Fifth Sense Website.