Kallmann Syndrome - A Patient's Perspective

A Patient's Perspective

Having Kallmann syndrome can have a profound affect on a person’s life, however it will affect different people in different ways. Age of diagnosis and treatment is a big key to how well an individual patient copes with the condition. For some patients the ability to put a name to the condition and the knowledge that they are not the only person in the world with this condition is very reassuring. With the key symptom being not going through puberty at the normal age it can produce a huge effect on a person’s social development as well as physical development.

It will vary from person to person but in general men with Kallmann syndrome will have a smaller penile length than the average for the population, which in addition to the lack of testicular development can affect self confidence to such a degree that sexual activity is not even attempted. Most men with Kallmann syndrome can have a normal, active sex life but the confidence required to achieve this is sometimes beyond some men with Kallmann syndrome and they have less sexual activity than other people the same age.

Another aspect of Kallmann syndrome is the social isolation. Since it is such a rare condition a lot of patients with Kallmann syndrome have never even met or talked to a fellow patient. The ability to meet and talk to other people with the condition goes a long way to helping a patient come to terms with the condition.

The treatment of patients with Kallmann syndrome is fairly straightforward once diagnosed with the use of hormone replacement therapies and fertility injections in some cases. The bigger issue is the initial diagnosis, especially in the crucial teenage years. The patients that cope better with Kallmann syndrome on the whole are those that are diagnosed before the age of 16 and have prompt treatment. Problems can arise if people are told to "wait and see" too long into their teenage years instead of being referred for specialist endocrinologist review where a case of pubertal delay can be separated from a case of Kallmann syndrome.

Outwardly there is nothing striking about a person with Kallmann syndrome. They will not look any different from anybody else, and come in all different shapes and sizes. Once treatment is started and normal hormone levels are restored there are no side effects or life expectancy issues associated with having Kallmann syndrome. The lack of sense of smell might be noticed by people, but this can easily be explained away without going into a full description of Kallmann syndrome.