Finding information on Kallmann syndrome.
Kallmann syndrome and other forms of hypogonadotrophic hypogonadism are rare conditions. It is some times very difficult to find primary physicians or GP’s who have even heard of the condition.
Sometimes even when we are treated by consultants in hospitals we might be the only patient with KS or HH that they are seeing at that time.
It is sometimes difficult to find reliable information on the condition. Partly this is due to the fact that there is so much still to learn about the genetic causes of KS / HH. However there is information to be gained on the current diagnosis and treatments available for KS / HH.
One area is the number of different forms of testosterone treatments available now. A lot of people I speak to seem to be unaware of the different forms of treatments that are available. Some will work better than others and will suit different people.
There are a number of good websites about where you get information and some forum groups where you can talk to other people with Kallmann syndrome. I have left some links to some below. A lot of people with KS or HH find it very helpful to be able to talk to fellow patients. The majority of people with the condition will have never met anybody else with the condition and there can be a big advantage in meeting with and talking to other people who have gone through similar situations and know how you feel.
I talk to a lot of people with Kallmann syndrome through MSN messenger or Facebook and am always happy to talk to new people or try to introduce them to other people they may wish to talk to.
My e-mail address: neilsmith38@hotmail.com
e-medicine web page on Kallmann syndrome:
http://emedicine.medscape.com/article/122824-overview
Kallmanns.org web page:
Facebook group on Kallmann syndrome:
Yahoo Forum group on Kallmann syndrome:
Kallmann Syndrome - delayed or absent puberty 