The hidden side of Kallmann syndrome / hypogonadotropic hypogonadism - missing out on puberty and adolesence.
Kallmann syndrome (KS) is a form of hypogonadotropic hypogonadism (HH). It affects puberty and fertility.
People with KS / HH do not undergo normal puberty and will normally be infertile.
Hormone replacement therapy can help with some of the physical symptoms and there is even specialist treatments available to help induce spells of fertility.
It is the pyschological aspects of the condition that concern me more at the moment. I talk to and meet many fellow patients and it is the perhaps the pyschological aspects that cause the most problems to fellow patients regardless of their age of diagnosis or treatment.
As with most rare disorders it is difficult to discribe to others what it is like to have the condition. Puberty and adolescence are such cornerstones in the development of the individual to miss out on them must leave lasting effects I think.
Having late puberty, being a "late bloomer" can be bad enough. However to be left behind totally is even worse. To be told to wait and see when you are a teenager as your friends develop physically and emotionally around you is not easy.
In my own situation I had a normal enough childhood, nothing seemed amiss, apart from my poor hearing and lack of sense of smell. At the time nobody linked this to my lack of puberty. If they had, I may have been diagnosed earlier than 23 years of age.
Socially i think I was a normal enough child but as a teenager I became more and more socially isolated. Through my own fault, I see now. I was invited to events with my teenage friends but as I grew older I felt more and more distanced from them. I began to turn down invitations because I felt so out of place. Eventually the invitations stopped totally.
Since I did not go through puberty, I felt physcially out of place as well as socially out of place. The doctors just said "wait and see", so I did. This was just before the internet age. I knew I was missing out on relationships and indeed even sexual relationships while a teenager or later at University. I just assumed it would all catch up eventually.
I concentrated on other things, I was not un happy as a young adult but perhaps I modified my personality and behaviour to make up for feeeling out of step of my age group. I did not learn the social skills or notice the signs of potential relationships. I developed my own traits to appear normal enough to function, trying to forget other things in life.
I was not diagnosed until I was 23 and it was not until I was about 25 that my hormone levels (testosterone) reached that of a normal male. What happened next is another story that i would be happy to share another time.