I had a fairly uneventful childhood. I was late in starting to talk and walk when very young, but by the time I got to school I was like any other 12-year-old. I had problems with my hearing but never thought much about it. During middle school all my friends started to go through puberty, but I showed no signs at all. I got to 15 and still showed no signs. After an exam by the school nurse, I was sent me to my doctor who just said I was a “late starter.”
This was the same story when I was 16 and even 17. By the time I was 18 I still had not started puberty. I was sent to both a urologist and a general medical consultant at the hospital who both said I should just wait and see. I was put on very low dose testosterone injections—these made no difference at all.
I went through University still labelled as a “late bloomer.” My educational life was fine but I had no social confidence at all and no desire or ability to form physical or emotional relationships. I just assumed something would start eventually. I even stopped taking the testosterone injections as they were having no effect on me. At the age of 23 I started my first job as a biomedical scientist working in a blood transfusion laboratory at the Royal Free Hospital in London. One day I went to see one of the endocrinologists working there and told him about my condition. The first question he asked was “could I smell?”
No doctor had ever asked me that question before and I had never thought to mention it to a doctor before.
This conversation led to my diagnosis of Kallmann syndrome. I have since been on a much more effective form of testosterone treatment and have been on clinical trials for fertility treatments. Getting the diagnosis and putting a name to the condition was a very big step in being able to cope with the condition. Just knowing that you are not alone with the condition is very beneficial. Early diagnosis and treatment means so much in this condition and I spend as much time as I can in raising awareness of this condition and to stop other patients from being mislabeled as “late developers” or “late bloomers.”