This is a major issue for all patients with GnRH deficiency and its impact can be very severe in some cases, though it may vary from individual to individual. As might be expected there are a number of psychological problems that have been reported because of the absence of puberty. The teenage years can be traumatic enough for ‘normal’ teenagers but to be left behind by your peer group brings up a number of other potential issues including:
On the whole these can be overcome. Web-based support groups as well as local support groups can all help to provide a forum for a person to talk through any issues they may have. It may just be a case of talking to somebody else with the condition or more practical help with treatment issues.
While testosterone and oestrogen are not vital hormones for life, their absence or deficiency can seriously impact quality of life.
The major concern of the failure to undergo treatment is the increased risk of osteoporosis or low bone density. If left untreated, osteoporosis can affect a person with GnRH deficiency at any age. Some people with GnRH deficiency will require extra treatment to help combat the effects of osteoporosis.
Men with low testosterone might feel tired and lethargic most of the time, have problems sleeping, have a low sex drive and have a problem getting erections.
Affected men and women may be rather sensitive about their bodies to view and so often do not expose adequate areas of bare skin to strong sunlight to make enough vitamin D. Vitamin D deficiency can contribute to osteoporosis, but is easily treated with tablet supplements and/or making lifestyle adjustments.
The sense of smell might be considered the least important sense but its absence can cause a few problems. For those with Kallmann syndrome here are important points to remember:
It is possible for the majority, but not all people with GnRH deficiency to become fertile but it will require specialised treatment and will involve consultation with doctors experienced in reproductive endocrinology. In some cases women with GnRH deficiency can achieve fertility within months but it might take up to two years of treatment for men with GnRH deficiency to achieve fertility.
Assisted fertilisation techniques are available but they are not always required. The success rate for patients with GnRH deficiency is around 75%.
Not at present. It is very difficult to cure a congenital disorder; most of the genetic research is focused on the fatal congenital disorders such as cystic fibrosis.
There is research being undertaken into the possibility of restoring the GnRH production by the hypothalamus but this is at a very early stage.
Some cases of GnRH deficiency, estimated to be only around 10%, do correct themselves later in life with normal hormone production and fertility being achieved after a period of treatment. At present the reasons for this are unclear and doctors are unable to predict which cases this will occur in.
There is no reliable evidence that GnRH deficiency alone has any effect on the life span of an individual.