Late bloomer at 23 - Kallmann syndrome

The story of Neil

I was diagnosed with having Kallmann syndrome at the age of 23. Up to that point in my life, I was still labelled as a “late bloomer”. Doctors had told me just to “wait and see”.

I had a fairly uneventful childhood and did reasonably ok at school and went to university to study Biomedical Sciences. All this time though I still looked like I was 13 or 14 years old, even after I had my growth spurt between the ages of 19 and 20. I had slight hearing loss and no sense of smell but my biggest issue was the fact I still had not started puberty. I had not changed since childhood. At the time I believed the doctors and kept waiting for the changes to happen.

It was a chance meeting with an endocrinologist in the hospital where I worked that led to the diagnosis. I had not been sent to him, I just found him outside his office one day. He asked if I could smell. I am sure he was the first ever doctor to ask me that question.

That was the start of my journey learning more about the condition and then slowly becoming a patient advocate for the condition. I now try to raise awareness of the condition the best I can. I like meeting fellow patients and helping them if I can and the interaction helps me as well.

I still have not gone through puberty and am still infertile. However, being on treatment has helped a lot physically and the knowledge of the condition and the interaction with other patients has helped with the psychological issues of having the condition.

I was not easy feeling left behind both physically and emotionally but the diagnosis and fellow patient interaction have helped me a lot.