Written by Neil Smith

I have a rare hormonal condition called Kallmann syndrome.

Its main symptom is a failure to start or fully complete puberty. It is also associated with a lack of sense of smell. There can be other symptoms that sometimes occur with the condition; in my case I also have hearing impairment.

As a teenager I did not start puberty. I reached the normal Tanner stage 2 for a child but progressed no further. I saw doctors from the age of about 16, but each time I was turned away and told I was just a late starter or a late bloomer, and that I should just wait and see.

At 18 I was sent to see a general medicine consultant and a urologist, and they said the same thing.

I attended University and started my first job, still not having started puberty. I had no idea what was wrong.

I worked in a hospital in London, the Royal Free. A chance meeting with an endocrinologist there changed my life. When I mentioned I had not started puberty, he asked if I had a sense of smell. He was the first doctor who had ever asked me that question. It was from there that I obtained my diagnosis of Kallmann syndrome.

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I started on testosterone therapy, which helped with most of the symptoms of not going through puberty. However, I am still infertile and would require additional specialist treatment in order to become fertile.

I have to be on treatment in order to replace the testosterone I am missing.

Having a rare condition has affected my emotional life and relationships. I spend a lot of my spare time now acting as a patient advocate for my condition, helping to raise awareness for the condition. I help patients get in contact with other patients through social media and help with the transfer of medical information from medical specialists to fellow patients.