Kallmann's Syndrome Information


Kallmann's syndrome is a rare hormonal disorder which affects predominantly men but can also affect women.

Typical characteristics are a failure to go through puberty and an absent sense of smell.

Although the disease is not life-threatening, people with Kallmann's syndrome will have a hormonal imbalance resulting in a deficiency in one or two key hormones which are needed to maintain a healthy body.

Specialised hormone replacement therapy is available to treat absent puberty, but there is still no cure for a lack of sense of smell. Dependiong on the age treatment is started the hormone replacement therapy can help to produce most if not all the events associated with normal puberty.

Although a proportion of people with Kallmann's will have inherited the disease, most cases are random (sporadic) with no previous family history. Patients wishing to become parents will need to have specialised fertility treatment and in many cases this can prove to be successful.

The question of the inheritance of Kallmann's is a very difficult one to answer. In the majority of cases it is not clear if the Kallmann's can be passed on or not if a person goes through fertility treatment. There could be a 25% chance of passing it on, at most a 50% chance of passing Kallmann's syndrome down to your children.

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Terminology:

There is variation in the spelling and the use of the word "Kallmann" around the world and on other web sites.

The official correct name for the condition is Kallmann Syndrome.

Kallmann syndrome is a specific form of a group of conditions known as hypogonadotrophic hypogonadism, a term normally abbreviated to to just 'HH'. This will be explained in more depth on this web site.

The term Kallmann's syndrome is still widely used and is normally abbreviated to just "KS".

Unless specifically mentioned in the text any mention of KS will also apply to cases of HH as they are diagnosed and treated in exactly the same way.

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