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Kallmann syndrome…getting diagnosed in the first place.

May 27, 2011

Kallmann syndrome (KS) and other types of hypogonadotrophic hypogonadism (HH) are not easy conditions to diagnose. This might be for a number of reasons:

1. It is a rare condition, not many GP’s & primary physicians would have heard of it or come across a case before.

2. The lack of a definite diagnostic test, normally it is a case of ruling out everything out first.

3. Shyness & lack of willingness to talk about an embarrassing condition that nobody else ever seems to have heard of

4. Being dismissed as a “late developer” or “late bloomer” and not being taken seriously by doctors normally makes people less willing to go back and see the doctors again.

From my own experience as a patient and from talking to and meeting many others with KS / HH, here are a few comments:

1. Be polite but persistent. Some doctors may not like informed patients but sometimes you have to fight your case. If you are not getting anywhere, change doctors or get a second opinion. The bottom line is that anybody who has not started puberty by the age of 16 should be referred for consultant review. Being told to “wait and see” is not an option.

2. Ask to see any blood test results, and look for any values which are not in the normal ranges for your age. In KS / HH this is particularly important to distinguish between simple delayed puberty and a case of KS or HH.

3. Having delayed puberty can be very embarrassing and it not easy to talk about with others, especially as a teenager. It does help if you can confide in oner person you can trust. Talking to somebody will always help.

4. Do not always accept the first answer given. There are different treatment methods out there and new fertility treatments. Your doctor may not have heard of them. Do some background research. There are some good KS / HH websites and discussion groups on the internet now.

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