Kallmann's Syndrome is not a very well known condition, even in the medical community.

The actual incidence is difficult to know for certain but estimates are in the range of 1 in 10,000 for men and 1 in 50,000 for women.

On one hand it is a very mild condition to have, there is no change in life expectancy and no pain associated with having the condition. The only big thing to watch out for is the increased risk of developing osteoporosis, or "brittle bones" due to the low levels of circulating sex hormones. The lack of sense of smell may get noticed from time to time and may cause a few embarrassing or awkward situations during life.

However the psychological damage of not going through puberty at the same time as you peer group, or even not all, can be immense. Just how damaging will depend from individual to individual and will be affected by age of diagnosis / treatment, knowledge of the condition and family & friends.

There are two aspects of not going through puberty that have to be considered. One is the feeling of being physically different from the people around you and the other is the fact that you will be infertile without treatment. Each of these may be more important than the other depending if you are male or female or at what stage of life you are at.

Since this is a new blog, I thought I would post a little more information on myself in the vain hope that somebody will read this blog one day.

I was born in Swindon, but grew up in Plymouth, Devon here in the UK. After a fairly uneventful time at school I went to University in Plymouth, Bradford and Portsmouth.

I work as biomedical scientist, usually in a blood transfusion lab somewhere in the country. After my training at the Royal Free in London, I have worked in hospitals in Harefield, Harlow, Watford, Gillingham, Birmingham, Oxford & Glasgow. I am just about to start another placement in Burnley.

I like traveling, but I only started going abroad since starting my first real job. My first ever trip abroad was to Pakistan, I have since been to Sweden, Belgium, America and Australia. There are two places that a person must visit if they get chance in the life: The Grand Canyon and the Great Barrier Reef.

I work in professional sport during the summer as a cricket scorer and statistician. What started out as a hobby is now a full time job during the summer months when I work for Worcestershire County Cricket Club. During the winter months I go back to work as a biomedical scientist.

That should be enough boring information for now.....if anything exciting happens, I may just post again...

Kallmann's syndrome is a form of hypogonadotrophic hypogonadism (HH). This is a very long winded way of saying that there is a breakdown in the communication between he brain and the gonads, either the testes or ovaries.

In Kallmann's or HH there is a failure to start or to fully complete puberty. A person will Kallmann's will also have an absent or very reduced sense of smell. Without the correct treatment a person with Kallmann's or HH will not go through puberty, most probably be infertile and have a increased risk of developing osteoporosis.

People with Kallmann's have to take a form of hormone replacement therapy to replace the hormones that are normally produced by the testes or ovaries.

It is a rare genetic, hormonal disorder. The exact genetic cause is unknown, though are a few genes under investigation. It is a lot rarer then the better known Kleinfelter's and Turner's syndromes which have a known genetic cause. It can be inherited if a person undergoes fertility treatment.

It is not a very well known condition, even in the medical community. A lot of ideas have changed about delayed and absent puberty in the last 10 years so a lot of medical text book are out of date.

There are at least 2 patient groups, one on Yahoo and one on MSN where people can get more information.

There are also 2 web sites where information can also be obtained.

www.hypohh.net

www.kallmanns.org


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That is enough about Kallmann's for the moment. I am sure I will mention it again.....

New blog !!

Hello everybody,

I thought it was about time I started a web blog as well.

I have attached it to a web site I run about a medical condition I have. It is called Kallmann's syndrome. It is a rare hormonal condition that means I have no sense of smell and did not go through normal puberty when I was younger.

I may come up with more interesting things to write about, about my work, sports & travels in the next few weeks.