AHN - CAH Information for Media

Information for Media

CONGENITAL ADRENAL HYPERPLASIA

With reference to your enquiry, we are writing to briefly explain details of the above condition and the aims of our support group: -

Congenital Adrenal Hyperplasia (CAH is a metabolic condition which affects the production of steroids from the adrenal glands. The 3 main types of steroids are, cortisol (which is the stress hormone), aldosterone (salt retaining steroid) and androgens (male hormones). Both boys and girls with the condition are exposed to an excess of androgens whilst in the womb and although this has no visual effect on male babies, the females are usually, to some extent, virilised and should therefore be identified at birth. These girls obviously have female chromosomes (XX) and have a normal uterus, vagina and ovaries internally. Both male and female are fertile and can have children of their own. However, surgery can be done to correct the appearance of their external genitalia.

Boys are more difficult to identify. In CAH there are salt losers and non salt losers. Salt losers generally become ill within the first 2 weeks of life (they suffer what is known as an adrenal crisis). Hopefully, they then receive the appropriate tests and are put on the replacement steroids required. If not, unfortunately, this is a potentially fatal condition. Non salt losing boys are usually identified by tall stature and signs of precocious puberty between the ages of 2-6 years. These tall boys will have an advanced bone age which will have affected their final height potential and they will therefore be quite short adults.

All parents expect their children to be healthy and most are devastated to learn that their child has a chronic life threatening disorder, which will require life-long treatment. The Adrenal Hyperplasia Network was set up to help CAH sufferers and was formed in January 1999.

a) To support research

b) Give support to sufferers and their families

c) To increase awareness of the condition to both the public and to the medical profession

Fortunately, the treatment for Congenital Adrenal Hyperplasia has improved dramatically over the years and the outlook for those affected is extremely encouraging.

Thank you for your enquiry and we hope this information has been of some help to you.

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This Page was updated 30-Apr-2006

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