Psychological issues:

Just how having Kallmann’s syndrome (KS) or hypogonadotrophic hypogonadism (HH) affects an individual will vary from person to person.

I can only write from personal experience and from talking to other people with Kallmann’s or HH. The following is not from a scientific study point of view, but from my own personal experience in meeting and talking to other people with KS or HH.

Everybody’s experience will be different.

The most important factors I would have to say that influence a person living with KS or HH are:

Age of correct diagnosis

Amount of information given about the condition

Friends & Family

Age of diagnosis.

KS and HH are very rare conditions and they require specialist help in their diagnosis. They are not the first conditions that a doctor would think about if a patient came forward with a case of delayed puberty. It takes a range of tests for a doctor to be able to distinguish between a straight forward delay of puberty as opposed to a case of KS or HH.

There are more common causes of delayed puberty, and it might be just a delay rather than an absence as seen in KS or HH. A delay of puberty is easily treatable with a quick course of medication that will kick start puberty and allow development to occur naturally.

In the past doctors would tell a 15 year old boy or girl, that they were just late developers and that they should just wait and see and let nature take its course. Specialist doctors now suggest that anybody by the age of 15 who has not at least started puberty should be referred to an endocrinologist for specialist evaluation.

In any peer group there will always be early and late developers, but to appear to be left behind totally can cause a wide range of psychological problems. However if it is apparent that it is a genuine medical condition and you are getting treatment for it, these problems appear to be lessened.

One of the major problems I have found when talking to people with KS or HH is this idea that they are the only person in the world with this problem. The idea of being left behind by their peer group makes them even more shy and withdrawn and makes them less likely to ask for help.

A lot of people find it hard to talk about their sexual development and not to develop normally at the same time as the people around you makes a person very embarrassed and not very likely to go to a doctor for help.

Early diagnosis allows for early treatment. In the past the peek age for diagnosis appeared to be in the early 20’s. A lot of people get diagnosed even later than that. This late diagnosis can cause its own problems apart from the physical effects of having low sex hormone levels.

KS and HH are very difficult, but not impossible, to detect before the age of puberty is due. A person with KS or HH may well grow up through childhood without any inclination that there is a problem. There are symptoms that do occur very early in life such as un-descended testicles, but without any family history these symptoms are not very likely to suggest a case of KS or HH. The lack of sense of smell can be seen as only a minor side effect of KS (but not HH) but is a good early clue if doctors know what they are looking for.

At present the major cause of detection of KS or HH is a failure to commence puberty or commence menstruation. If this is picked up early, treatment can be given, and to other people there will be no outward problem. A person with KS or HH will still need hormone treatment of some sort, but an early start will produce the normal pubertal changes and they will not feel apart from their peer group.

Amount of Information.

Medical training is a long, complex affair. It is impossible for a GP or general physician to know every condition that could occur.

Delayed puberty is relatively uncommon, but is far more common than a case of KS or HH.

Acquired or primary hypogonadism, where the sex hormones reduce in adult life after being normal is far more common than KS or HH, which are secondary hypogonadism conditions, where the sex hormones have always been absent.

Usually a doctor will always look for the more common condition first. Some doctors may not have even heard of KS or HH, because they have never come across a case of it before.

Since the advent of the internet there has been an explosion in the amount of information available on the web. In the past people had to rely on what a doctor told them, or if they were very keen they could look up information in a medical encyclopaedia.

These days it is a lot easier to pick up information on a whole range of medical conditions. This can be both good and bad.

KS and HH are both very rare conditions and as such there is little information on the web. Some of the information on the web is either misleading or just downright incorrect. Also medical research is always on going, so ideas and treatments can change. Information on the web can easily go out of date.

Nobody should ever act on information from a web site without consulting a medical professional. However sometimes a bit of background research allows more options to be considered and may lead to a more speedy correct diagnosis.

A theme that is common amongst a lot of KS and HH patients is a sense of relief when they can put a name to the condition they have.

As well as providing relief that they at last know that they are not the only person in the world with this condition, there is also relief in knowing that treatment is available.

Also there is a certain amount of advantage to be gained by a person knowing as much about their condition as possible. Of course it can be difficult at first when medical professionals start using a lot of medical jargon. However there is a lot to be gained from gaining an understanding of your condition and why certain medications have been prescribed. This can lead to a certain level of becoming pro-active when talking to medical professionals.

It is quite surprising how much can be learnt when the condition affects a person directly.

Friends & Family.

The influence of friends and families can have a major influence on how much or little a person is affected by KS or HH.

Being able to talk about the condition can help a lot of people. It might be a difficult topic to talk about even to close friends, but a lot of people with KS or HH have found it beneficial to be able to talk about the condition.

It will be impossible to describe to somebody what it is like to have KS or HH but with the correct information other people will have a better understanding and be able to empathise rather than sympathise.

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Kallmann’s syndrome and Hypogonadotrophic Hypogonadism may be considered to be insidious disorders to have. It is not the most obvious disorder to have and usually the only thing people will notice is the lack of sense of smell.

Positive Issues:

There is no affect on life expectancy associated with KS or HH.

There is a very low level of morbidity associated with KS or HH. It is a painless disorder.

The only major health issue is the possibility of increased risk of osteoporosis due a low level of circulating sex hormones.

No affect on the physical ability to have a normal sex life.

Negative issues:

Shyness

Low self asteem

Social interaction with peer group

Self confidence

Self image

Fear of sexual relationships