A few personal comments on Kallmann syndrome.

I was diagnosed with Kallmann syndrome at the age of 23, I have now passed fifty. Over that time I had have the pleasure of meeting and talking to many fellow patients from different countries around the world.

Kallmann syndrome is a difficult condition to explain to other people. It is not even one condition, as the name suggests it contains a range of different symptoms, each which their own severity. I do not think any two cases are alike, with people having different additional symptoms such as deafness, scoliosis, cleft lip, fused fingers, missing kidney or they may show none of these additional symptoms. I myself am partially deaf.

The key detail is the lack of puberty and lack of reproductive ability. Even this varies from person to person, with some people having virtually no puberty at all, while some have partial / incomplete puberty.

Anosmia is an additional symptom found in Kallmann syndrome patients only but not in patients with the associated condition hypogonadotropic hypogonadism. My anosmia does not bother me too much but it does get noticed from time to time.

These are only a few of my personal views that have occurred to me.

Kallmann syndrome is an invisible condition. I do not look ill, I do not look like I need to take medication. In fact I do not even have to take my medication but being on medication does greatly improve my quality of life.

Kallmann syndrome is most certainly not the same as being a late bloomer or late developer. I never went through a normal puberty even when on treatment. I am infertile unless I take specialised gonadotropin medication and even that can take at least 2 years to work. Since I was late diagnosed and started treatment late I have an undersized / below average size penis and under sized testicles which have not grown since childhood.

I used to take testosterone as either an injection or gel. Currently I take a medication called hCG – human chorionic gonadotropin that allows me produce a low level of natural testosterone.

I was almost totally asexual throughout my teenage years and early 20’s. I tried to ignore that side of my life as best I could. I think having the condition has partly affected my ability to have both physical and emotional relationships but I made mistakes along the way that did not help either. I see myself as being bisexual now.

I think that is enough text for now. I do enjoy the chance to talk about and write about my condition to help raise awareness for others with the same condition. I think it helps me a lot. If you have got this far, thank you for reading.