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Huntington's Disease Youth Organization

Will my CAG repeat change?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. My CAG repeat is 45 will this change or stay the same?

Jessica, Young Adult, USA

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A. Hi Jessica,

Thank you for reaching out with your question.

CAG counts do not change overtime. Everyone is born with a certain repeat length and that will never change. Currently, having a CAG repeat number over 40 means that you will develop HD at some point in the future, but there is no clear indication of when symptoms may begin occurring based on the CAG number. This can be a lot of information to process and can be very scary. Have you been working with a genetic counselor through the testing process? Do you have some support in your community or at home to talk to about all this information.

Please let us at HDYO know how we can support you in anyway.

Take Care,

Chandler Swope, LICSW