The story of Ivan
I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn’t invite me to their games, so I preferred books to humans and became a real bookworm. That is why I didn’t realize the difference between me and other boys. I wasn’t suprised at the lack of facial hair, when my peers bragged of light fluff over the upper lip. I’ve never had an opportunity to compare my genitals with somebody else’s ones. In other words, I didn’t realize that I hadn’t gone through puberty.
When I was 19, someone said, “You stink!” It was the first wake-up call. I suddenly understood, that I had never smelt any odour! It was the first time I thought that I probably differed from others. But about 20 more years had passed until my condition finally got its name: Kallman syndrome. Those years were full of joys and tears, hopes and fears. Depression became my only mate. Every morning I woke up with suicidal thoghts. I underwent a bilateral mastectomy because of gynecomastia developed as a result of lack of testosterone. I was examined by many doctors and no one had even supposed I had a rare genetic condition. Only when my breast tumour relapsed, my new oncologist asked me, “Can you smell?” So, I’ve got my diagnosis only at the age of 36.
What does it mean for me to live with Kallman syndrome? First, it means to look differently. Low (extremely low) testosterone levels shaped my body in a feminine way (although I am a male genetically and consider myself a male). My bones became fragile and I developed osteopenia (a very common comorbidity of the KS). I developed type 2 diabetes mellitus and high blood pressure (these conditions are not typical for the KS but may develop due to the lack of testosterone and overweight). Fortunately, the above problems were partially fixed when I started treatment. I can’t smell and, therefore, I can’t understand whether the food is good or not (and I used to eat something mouldy without realizing it). I also can’t smell a gas leak, for example.
But now I have good friends, who support me a lot. I have a loving wife who understands my condition and helps me to cope with it. She also smells all the food I eat 🙂 I receive regular injections of testosterone and take other medicines to control my condition. And finally, I had my puberty! Oh, it was like a bomb blown in my head. The process that normally takes several years, took only a couple of weeks in my case due to the testosterone shots. However, I still have to fight with osteopenia, diabetes, and depression. This is a fight that never ends with a victory, and it is a victory that never stops fighting.