- General questions
- FAQ's
- 1. My doctor told me I have Kallmann's syndrome. What does this mean ?
- 2. When was Kallmann's syndrome first discovered ?
- 3. What does an endocrinologist do?
- 4. I have heard of "hormones" before, but what are they ?
- 5. What and where are my hypothalamus and pituitary gland ?
- 6. What happens during normal puberty ?
- 7. As a teenager, I didn't go through puberty at all. Why ?
- 8. How good are my chances of becoming a parent ?
- 9. Why did my doctor ask me whether or not I had a sense of smell ?
- 10. Why don't I have a sense of smell ?
- 11. What has my absent sense of smell got to do with absent puberty ?
- 12. Others have said that I have long arms and legs. Can this be true ?
- 13. Will I develop 'brittle bone disease' ?
- 14. What other characteristics of Kallmann's syndrome are there ?
- 15. What is the difference between Kallmann syndrome and Klinefelter syndrome ?
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Kallmann's Syndrome Information
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Medical Warning
Information on this site is provided by people with personal experience of Kallmann's syndrome. Symptoms and appropriate treatments are different for different people. You should not treat anything on this site as a substitute for advice from a trained medical professional.
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© 2008 Neil Smith
1. My doctor told me I have Kallmann's syndrome. What does this mean ?
Kallmann's syndrome is a rare disorder which, according to a recent estimate, affects around 1 in 10,000 men and 1 in 70,000 women. People with Kallmann's have an hormonal deficiency which, unless you seek appropriate medical treatment, results in a failure to go through puberty normally. In other words, without treatment you remain sexually underdeveloped and infertile.
Another characteristic of Kallmann's syndrome is an absent sense of smell, or anosmia. Although most people with Kallmann's are anosmic, a small minority are hyposmic, meaning that they have only a very weak sense of smell. Kallmann's syndrome is only one of a group of related diseases. If you are not anosmic or hyposmic and you are having hormone replacement therapy, then you are almost certainly affected by an hormonal disorder other than Kallmann's syndrome.
It is very difficult to diagnose Kallmann's syndrome in a young child. However, alert paediatricians can sometimes detect signs early on, especially if the child cannot smell. The disease is more easily diagnosed in a teenager or adult who has failed to go through puberty and in whom an abnormal sense of smell is observed, but many are too embarrassed about their lack of sexual development and are nervous about visiting their GP. Consequently, thereare probably many cases of Kallmann's syndrome that go unreported.

