The total lack of the sense of smell (anosmia) or a strongly reduced sense of smell (hyposmia) is a classic, defining symptom of Kallmann syndrome.

Just why the sense of smell is linked to a failure to start or fully complete puberty is dealt with in more detail elsewhere on this site. It is just coincidental that the area of the brain that controls the start of puberty and the sense of smell are located almost in the same place and a very small defect during the development of the brain prevents this area forming correctly.

The anosmia will be present from birth so as such is a good indicator towards Kallmann syndrome, especially if there is a family history.

Any boy aged 15 or girl aged 14 who has not started puberty and can not smell should be referred to an endocrinologist for specialist diagnosis and treatment.

To a lot of people with Kallmann’s the lack of sense of smell is not a major issue. We have never had it, so it is difficult to miss it.

It is the one symptom that will be picked up by our friends and work mates, but nobody is going to immediately think, that since you can’t smell you have not gone through puberty. There are lots of other causes of anosmia, both from birth and acquired during life.

There are few issues that people with Kallmann’s may want to bear in mind. Most of these become second nature as you grow up and only become apparent when you meet new people. Even from personal experience I have eaten sandwiches only to notice the bread is a bit mouldy after I have taken a couple of bites, drunk milk that was turning to yoghurt and being the only person in the room that did not notice that my new nephew needed his nappy changing.

Sense of taste:

The sense of taste is very much linked to the sense of smell. I have spoken to lots of people with Kallmann syndrome who seem to have various degrees of the sensation of taste. We may miss the aroma of foods such as fresh bread, coffee, garlic but we still taste foods, it might not just be in the same way as other people. We can still drink wine and notice differences between bottles, but do we notice the same differences as other people. On the other hand if you listen to some “wine experts” you do feel that they are making it up as they go along sometimes.

Food wastage / spoilage:

We may have to be a bit extra careful when foods reach their expiry date, I have found this especially true with milk and bread. It is probably not a good idea to eat or drink any food that has been opened in the fridge longer than 4 days. There is a period of time when food such as meat smells bad, but still looks ok, which would lead to problems.

Smoke / gas alarms:

If you live alone it might be a very good idea to fit smoke detectors / fire alarms in the house. Also if you have a gas boiler or cook by gas it might be a good idea to fit a gas alarm as well such as a carbon monoxide detector. It is very easy when you are cooking to get distracted and you can’t not smell the food is ready, or worse still that it is burning.

Personal hygiene / clothes:

Everybody will have different ideas on what counts as personal hygiene, and you may want the help of a very close friend or partner in this matter. Since we can’t smell perfumes & deodorants it is sometimes we can’t notice how strong we are smelling to other people. Some people with Kallmann’s only buy deodorant free cleaning products. Of course how often you change you clothes is going to be down to personal choice, but sometimes we may have to play safe and change clothes more often, especially in social situations.