Kallmann Syndrome is not an easy condition for people to understand. Families, partners and friends of people with KS or HH will hopefully help to be understanding, but it is almost impossible for them to know what it is like to have a condition which prevents you from not going through a fundamental stage of development.

One of the big hurdles is the initial diagnosis with most cases of absent / delayed puberty not being taken seriously by primary clinicians. Far too often I hear stories about people who are 16 or older being told to "wait and see", or that they are a "late bloomer". Over 99% of people should have at least started puberty by the time they are 16. Anybody who is 16 with no obvious puberty signs should be referred for an endocrinologist review to determine if they could have KS / HH.

Once diagnosed treatment is fairly straight forward. The 3 monthly injection now available can be stretched to 6 months for some people. Fertility treatments are available and are successful in a lot of cases, both for the men and women.

While on the physical side Kallmann syndrome is a fairly benign condition. It has no shortened life expectancy associated with it and no physical pain. If left untreated the major problem would be the greatly increased risk of osteoporosis or brittle bones due to the low levels of testosterone or oestrogen.

It is the psychological side of Kallmann syndrome that is so poorly understood. I think a lot of it arises from the poor self image a lot of people with KS / HH have. Missing out on such a key developmental step, both physically and emotionally means some people with KS / HH take a long time to catch up with their peer group, if they ever do.

While most people with KS / HH can have normal sex lives, for a lot of people there is a major obstacle of poor self image that they have to overcome. In my own non-professional opinion, but through talking to a lot of guys with KS or HH it is those who have been diagnosed & treated at a later age that have the most trouble forming and keeping relationships.