If you're at risk

Huntington’s disease is caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do).

This means that if people in your biological family have Huntington’s (that is, the family you are genetically related to), then you may be at risk of the disease.

Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it.

Living with the knowledge that you are at risk can be very worrying. You may feel that you would prefer to know for certain whether or not you have the faulty copy of the gene. Alternatively, you may feel that you would prefer not to know, until or unless you get symptoms. Deciding whether to have the genetic test is something to think very carefully about as it could impact the rest of your life. It may also affect others in your family, but it is your choice.

You can get support and information about testing and living with the risk of Huntington’s. Although it is a rare disease, other people live with this risk and you are not alone.

Getting the right information and support for you is vital and we’re here to help.


Help and support

Sources of support

Living with the risk or the symptoms of Huntington’s means facing some particular challenges, emotionally and practically, which most people don’t have to face.

Genetic testing

Huntington’s is a genetic disease and a DNA test can now be carried out which will usually tell you whether or not you have the faulty gene that causes it.

Starting a family

If you have Huntington’s or know you are at risk of it and would like to have children now or in future, you may wonder what your options are.

Insurance and legal matters

Any serious health condition or disability can affect you in terms of certain types of insurance, so it makes sense to find out the facts and make sure you are adequately covered.

Family stories