To
smell or not to smell ??
The total lack of the sense of smell (anosmia)
or a strongly reduced sense of smell is a classic, defining symptom of
Kallmann’s 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’s, 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’s 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.
Neil Smith