Not everybody will start puberty at the same age, in any peer group there will always be people who start earlier than others.
However there does come a stage when you end up being the last one to start. By the age of 15 most people, over 95% of them, should have at least started puberty.
By the age of 16 virtually everybody should have started.
Kallmann syndrome is not an easy condition to diagnose mainly because it is so poorly understood, especially by GP's or primary physicians. A lot of people in my position at the age of 15, 16, or 17 are told that they are just a late starter, late bloomer or told they should just go away and wait a few more months.
For some people this may well be true, but for those of us with Kallmann syndrome puberty will never start and you go into your late teens and early 20's thinking there is something very wrong, you are the only person in the world that missed out on puberty and getting a strong mistrust of the medical profession.
At the age of 16 if somebody has not started puberty they should be referred to an endocrinologist for specialist review. They then can determine whether it is a case of "delayed" puberty or a possible case of Kallmann Syndrome or HH.
Some doctors are reluctant to send teenagers for review and tell them all will be OK soon enough. This can be potentially very emotionally damaging to the person involved. Puberty is a very important step both physically and psychologically in any person's development and to fell left behind when the rest of the peer group is advancing can produce effects which last long into the person's life.
In all my conversations and meetings I have with people with Kallmann syndrome one point is made very clear, the people who cope better with this condition are those who are diagnosed and treated early in life, ideally between the ages of 15-17.
A web blog about my life and a rare hormonal condition called Kallmann syndrome. It is a condition which results in a failure to enter puberty and a total lack of smell. It is a form of hypogonadotrophic hypogonadism
About Me
- Neil Smith
- Worcester, Midlands, United Kingdom
3 comments:
Hello, I stumbled across your blog and wanted to share my story. I am a female with Kallman's syndrome. I was diagnosed how you've described - when I did not go through puberty at age 16. I started taking hormonal supplements and by all accounts have had a very normal adulthood. I'm 35 now. I had hormonal support to get pregnant and have a 2 year old boy with my husband. My 2 year old was diagnosed with Kallman's at birth and immediately prescribed a 3 month low dosage of testosterone. He is seen regularly by an endocrinologist, but we don't expect any additional medical interventions until 13 years of age. I just wanted to share as I read a lot about people who are diagnosed at puberty, but not about those that inherit and are diagnosed as infants. I also find there can be a funny stigma with these types of disorders. I have obtained a PhD and my son is doing very well. So for all who believe there is some type of intelligence defect, that hasn't appeared to be the case in our circumstances and I've never seen a legitimate example where this was a factor.
Thank you for your post.
To be diagnosed with KS or HH at such a young age is still very rare. Normally it only happens when there is a a strong family history and one of the few known genetic defects known to cause KS / HH is present.
Since over 60% of KS / HH cases still have an unknown genetic cause the majority of people are not diagnosed until after the age puberty is due, normally in their late teens or early 20's.
I try to tell people that once diagnosed & treated the majority of people with KS / HH can have normal lives and most can have children. It will vary from person to person as we don't all have the same symptoms.
Early medical text books and papers state that people with KS / HH will have low intelligence and have a shortened life span. There are still some people who believe this, even though it is totally wrong.
My 2yr old son (3rd of 3 boys)has been diagnosed with what they suspect to be Kallmann Syndrome.....I'm new at this and trying to get my head around it!!????
They are talking testosterone injections.... I'm a bit worried cuz he seems so young. - should I be? Anyone had a young one go through this? What should I be asking? watching for? Doing? for him. Thanks! Contact merryn71@gmail.com
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