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Issues for Adults with CAH - Men and Women


The problem of being over weight  

Many people with CAH, women in particular, have a battle to avoid gaining weight.  Mostly, weight gain in CAH is a side effect of treatment with hydrocortisone, prednisolone or dexamethasone and to a lesser extent, the oral contraceptive pill if used.  Short stature and depression can also make weight gain more likely.  Careful monitoring of weight is important as prevention of weight gain is better than a harsh weight reducing diet.  Careful adjustment of treatment and attention to diet and exercise should enable most people with CAH to avoid obesity.  A normal healthy diet which is low in sugar and fat and high in fibre is best.  A sugar craving can be hormone driven although the effect of various treatments is unpredictable.  Regular sustained exercise of an hour several times per week may be required to keep fitness levels up and weight down.

What should my weight be?  Doctors use an equation called the body mass index or BMI to work out how heavy you should be for your height.  Your BMI is your weight in kilograms divided by your height squared - wt/ht/ht.  The normal range of BMI is 20 to 25 kg/m2.  The next figure shows the normal range for BMI.


 


BMI figure


 

 
 
 
 
Will my baby get CAH?

It is very rare for a parent with CAH to pass the condition of to a child – less than 1 in 100 chance.  CAH is autosomal recessive condition meaning that one copy of a defective gene must be inherited from each parent to make an individual who is homozygous for CAH.  A parent with CAH has two defective genes but their partner is likely to have two normal copies that will make up for the defect.  That is, children of a parent with CAH will have one defective gene and one normal gene.  They will be heterozygous for CAH – a situation which has no effect on health.  It is current practice to test the partners of people with CAH by measuring 17-hydroxyprogesterone in the blood rather than to have a genetic test.  The chances of anyone with no symptoms or family history of CAH carrying a defective gene for 21-hydroxylase is between 1:50 and 1:100.  The issue of genetic testing should be discussed with your specialist well before you are planning a pregnancy because some tests are useful if performed ahead of time. The advice on this topic is likely to change with time so specialist advice should be sought as part of pre-pregnancy counselling.

Who should have genetic testing for CAH?

A change in the genetic code of the gene that is responsible for making the enzyme 21-hydroxylase is the most common cause of CAH.  There are only a few centres in the United Kingdom and elsewhere, where this genetic code can be 'deciphered' and the defect can be precisely defined.  Knowledge of this genetic defect in CAH has practically no effect on treatment and so the tests are not performed routinely. The only time that a genetic test is useful is to diagnose CAH before birth so that the foetus can receive early treatment by giving dexamethasone to the mother.  In this way, a masculinisation of the external genitalia of female foetus with CAH can hopefully be prevented.  In practice, genetic testing and antenatal treatment is only useful for families with one child already affected by CAH when the chances of having another child with CAH is one in four. Further details of genetic testing for CAH are outlined in pamphlet 6.

Sports

 

There is no restriction in any type of exercise for individuals with CAH.  Indeed exercise promotes good health and helps with both weight control and the prevention of osteoporosis.  With strenuous exercise an extra dose of steroid treatment is advisable especially in the early stages of training.

For those who wish to enter competition sports, the International Olympic Committee recommends declaring CAH and that steroids are being taken for medical reasons.  The IOC is unable to comment on whether hormone replacement steroids needed by those with CAH would affect the status as a competitor.  They were not willing to be precise on drug testing procedures which would probably include testosterone and related compounds.  They consider this an important issue, and with further investigations in the future, would try to establish the effect of medication necessary in CAH on the screening tests.

The Amateur Swimming Association can see no reason to exclude any one with CAH from competitive swimming, but recommended that the ASA should be informed of the competitor’s condition prior to the event.

Travel

There should be no restriction for travel or recreation for individuals with CAH.  If activity is likely to be stressful or if the destination does not have easy access to modern medical facilities, then is it wise to travel with hydrocortisone for injection.  Vials of hydrocortisone for injection with syringes and needles should be taken and a dose of 100 mg given into the buttock in cases of trauma or severe vomiting.  This action will make the situation safe until a doctor can be called.  Supplies of hydrocortisone should be divided between hand luggage and other baggage to that in the case of one supply being lost or stolen there is always a back-up.  A letter from a consultant can be useful so that contact can be made if illness occurs and to document the need for syringes and needles.  Long-haul flights can be stressful and a double dose of steroids is advised.

Employment

In general there should be no restriction for employment for individuals with CAH.  Commercial pilots, police, fire brigade and the armed forces are special cases where almost any condition requiring regular medical treatment can prevent employment.  

© Dr G. S. Conway 1999



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