IamA 40 year old plus male with Kallmann syndrome which means I did not go through puberty. AMA!
My short bio: I have Kallmann syndrome. It is a rare genetic condition that meant I did not go through puberty. I also do not have a sense of smell. After years of being dismissed as "late developer" or "late bloomer" I was not correctly diagnosed until I was 23.
Since I lack any testicular development I need to be on life long testosterone replacement therapy to give me normal male testosterone levels.
I am currently on another form of treatment, called gonadotropin therapy which should induce fertility.
I talk to a lot of fellow patients on-line and in person and I keep in touch with medical experts in this condition so I can try to help other people with it.
Late diagnosis is very common and we are often dismissed as late developers or late bloomers. The condition affects both men and women and has an incidence of around 1 in 50,000.
I am always happy to talk to other people about my condition.
My Proof: http://kallmannsyndrome.wordpress.com/
*I have updated the blog site to show the link to this page. *I will try to put some photos on my blog site later today *My Facebook page is easy to find and is open for all to see *A Google search for Kallmann syndrome will bring up photos & videos of me -plymouthlad38
****Thank you for all the replies so far. I must go off line for a while but I will be back soon. Please keep sending the questions, thank you.*******
*** I think that is all for tonight. Thank you all for your comments and questions. I am always happy to talk to anybody who has any questions. My experience is not the most typical of having Kallmann syndrome and I can give you lots of positive stories of how others contend with this condition. I am doing this to highlight the condition. I hope it has been of interest and help to some people. ***
Always happy to talk to any other patient with Kallmann syndrome or answer any questions anybody might have. I might do another one of these in the future.
***Another update if people are interested. I am 11 months into a clinical trial for fertility treatment for my Kallmann syndrome. I take 3,000 IU of hCG (Pregnyl) twice a week which has given me a steady testosterone level of around 11 nmol/l (about 320 ng/dl) which is on the low end of the normal range but it seems a good level for me.
I take the FSH type shot once every two weeks and I achieved a low level of sperm production after 10 months. The level produced was around 0.1 million / ml which is below normal but since this is the first time in my life I have produced sperm it is still a good result.
The testes have increased in size to around 7 cc, which are still small but getting towards double what they were before the treatment started. My libido has increased dramatically while on this clinical trial.***