The story of Neil Smith
I do not see myself as a “warrior”, I just thought it was a cool t-shirt to buy and wear. I have Kallmann syndrome which can be a rare disorder that is embarrassing to talk about but I do not mind talking about the condition.
Kallmann syndrome is a condition that prevents puberty from starting or fully completing. It is also associated with having a lack of sense of smell. I was first incorrectly labelled as a “late bloomer” because my doctors did not understand my condition. It was not until I was 23, having still not started puberty that I eventually received the correct diagnosis.
The condition means I have to take testosterone therapy all the time to replace the testosterone I should be making myself. I am infertile, but could become fertile with the appropriate specialised treatment.
Part of the problem with the condition is that people with Kallmann syndrome look totally normal. They do not look like they have a chronic condition that requires life long medication. However the lack of secondary sexual development and the infertility can lead to problems in developing emotional and physical relationships with others.
I did not look my correct age when I was younger. When I was 22, I still looked like I was 15 and had never needed to shave. Looking younger than your correct age might seem like a good thing but it does not help when you are trying to date. People in your age group do not take you seriously, it can be the same with work colleagues not believing you are old enough to do your job properly.
I like talking to fellow patients and trying to raise awareness for my condition to help others achieve and earlier diagnosis and treatment.Â
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