25th February 2005.News Item.
The major symptom is a failure to commence or to complete puberty. Kallmann's syndrome is also associated with a total or near total lack of sense of smell.
The failure of puberty makes this a very difficult condition for people to talk about. This web site hopes to take away some of the stigma associated with this and to provide information and support. It also hopes to emphasise the fact that the condition is treatable and you are not alone with the condition.
Its founder and creator spent a lot of time & effort in setting the web site up and I appreciate all the work he has done for this site and his help to fellow Kallmann's syndrome patients.
It is hoped that myself, as part of a group of fellow Kallmann's patients will be able to update this site and to carry on its good work and to keep it maintained. There have been a few changes in the treatment of Kallmann's since 1995 and an increased knowledge of the genetics behind the condition.
Even though the type of treatment has remained relatively unchanged, the mode of delivery of hormone replacement has not. There are a number of different drugs on the market, each have their own advantages & disadvantages. There are fertility treatments available, and whilst there can be no guarantees, the idea of a Kallmann's or HH patient having children of their own is not out of the question.
The genetics behind the causes of Kallmann's and HH still remain unclear, especially compared to other more common genetic conditions. However research is being done and new theories are being brought forward. These may not affect treatment given at present but in time may lead to a more effective early diagnosis of the condition
The best possible treatment is in the early diagnosis of the condition and the availability of information. This site has links to other sites where other information can be found, as well as a support group of fellow Kallmann's patients from around the world, who would be happy to answer any questions or just to have a talk on any subject.
There are links on this and other sites where information can be obtained.
You can e-mail this site, where we will try to provide an answer, or to point you
in the right direction to get more information.
Neil Smith
February 2005