IamA a patient with Kallmann syndrome which means I never went through puberty as a teenager. AMA!
I last did an AMA on this condition three years ago and there have been a few other patients posting about the condition since.
I was diagnosed when I was around 24 / 25. Up to that point I had always been labelled as a later developer or late bloomer.
Kallmann syndrome is a rare genetic hormonal condition that affects puberty. Patients with Kallmann syndrome will not start or fully complete puberty. They will also have no sense of smell (anosmia). It affects both men and women but is more commonly diagnosed in men.
I have to be on some form of hormone replacement therapy all my life and would require specialist treatment if I wanted to become fertile. Testosterone therapy has enabled me to have some physical changes that are normally seen at puberty but still have under developed genitalia.
I am very keen to raise awareness of this condition. I talk to and meet fellow patients mainly from the UK and US. I am happy to answer any questions about my condition.
Edit The condition is rare with an estimated incidence of about 3.75 in 100,000 people which means there are probably about 13,000 people in the US and 2,500 in the UK. The condition can occur with no sense of smell, anosmia but can also occur with a normal sense of smell.
The condition is genetic but no one genetic cause has been identified with over 25 different genes already having been linked to causing the condition, with 50% of cases still having an unknown genetic origin.
Even with treatment I never went through normal puberty as I never had any testicular growth. I have been infertile most of my life apart from a couple of occasions when on fertility treatment through clinical trials where I achieved a minimal amount of sperm production.
I have been on various forms of testosterone replacement therapy over the years including Sustanon monthly injections, Nebido 12 weekly injections, 6 monthly pellet implants, daily Testogel / Androgel gel application. Currently I take hCG / Pregnyl injections for testosterone production.
My video on You Tube: https://youtu.be/K3hSC6t2T1U