Some thoughts on Kallmann syndrome (KS):

Diagnosis of KS is sometimes difficult and is normally a result of eliminating all other possibilities. However any boy aged 15 or girl aged 14 who have showed no signs of puberty starting should be sent to an endocrinologist for specialist review and not told to “wait & see” by a GP.

The earlier treatment is started the more chance the patient will undergo as normal development as possible. A person will KS will never undergo totally normal puberty but treatment at the right age will produce most of the physical symptoms normally seen at puberty.

Early treatment & knowledge of the condition can reduce, but not totally eliminate, the psychological symptoms associated with KS.
No two people, even in the same family will show identical symptoms of KS.

KS is a genetic condition but it is probably caused by a combination of two gene defects working together which does not allow the prediction of inheritance to future generations.

There are at least 10 different genes that have been identified in cases of KS and it is impossible for anybody for anybody to be tested for all possible gene defects with any degree of certainty.
Fertility treatments are available for both men and women with KS and the success rate is higher than other groups of patients undergoing fertility treatments.

While there have been cases of KS being reversed in adult life most people in KS will require life long treatment with testosterone / oestrogen therapy or fertility treatments.

Without treatment people with KS will be at an increased risk of developing osteoporosis at any stage of life.

There are a number of different treatment methods to allow testosterone replacement for men, such as daily gel, daily patch, monthly injection, 3-monthly injection or 6 monthly implant. Which method is best will vary from person to person. Oral testosterone is rarely useful for men with KS.

A lot of people with KS find it helpful when they eventually meet and talk to others with the same condition which is normally difficult to explain to their friends & family.

Anybody who wishes to discuss these points or to talk to other people with KS they can find me on Facebook or MSN.

neilsmith38@hotmail.com