When you have GH it’s important to tell your adult family members as they might be at risk of iron overload. This includes your own children. If you have been told you have genetic haemochromatosis, your immediate family should be tested for GH with a genetic test

Should I tell my children, if they are 16 years or older?

Yes. It’s important that they know in order to protect their own health and that of any children they might have. 

Should I tell my younger children?

If your children are under the age of 16, perhaps you can think first about how they would benefit from knowing? And you might also think about any harm they might come to from knowing or from not knowing.

Children can worry about things that have not been explained to them. If you have symptoms, or if they know you are attending hospital, it may be better to explain briefly and positively that you have a health condition that is being treated.

Older children are likely to have some understanding of genetics especially if they study science subjects. How you explain health issues to children is important. Every family is different. Before you decide what to do, think about:

• how mature your child is, rather than what age he/she is
• what your child wants to know – answer questions honestly, simply, briefly and calmly
• how words we accept as adults can worry children – so be careful with your choice of words
• how children of all ages can be upset by feeling ‘different’ and knowing they might have a genetic condition can be upsetting – this is even more so among teenagers
• how your family usually deals with illness – if it’s in a positive way, children might be more ready to hear about it

Before you decide, you can ask your GP to refer you to a genetic counselling service where you will get expert advice about explaining GH to your family.