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Huntington's Disease Youth Organization

My father doesn't believe HD is in the family

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

www.hdyo.org

Q. My father completely rejects the identification of the HD gene (for which he has been tested twice in 2 different labs) and the diagnosis of onset. For the last 6 years, every attempt we and the doctors have made to convince him has failed. I don’t think he is in denial but that he lacks insight. He genuinely believes that the doctors have withdrawn their conclusions, which is a lie. When asked “What would it take for him to believe that HD is in the family?” His reply is “Nothing”. Do you have any advice on how we can help him to stop believing a lie and see the truth? Because until he accepts it, we or the doctors cannot help him.

Tim, Young Adult, UK

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A. Dear Tim,

Thanks for this question, which is really tricky and which I have seen in clinic a few times now. I don’t think there’s an absolute solution to the problem but here is a suggestion from me that might help.

Perhaps the thing to do is not to engage in the discussion at all about whether or not he carries the HD gene. It may be possible to get what your dad and the rest of the family want without confronting that specific issue.

I have three or four patients who I see who are in this situation and who see different members of our clinical team. All the family know and accept the diagnosis (but the patient doesn’t). However, they (the patients) agree to see me to manage symptoms and situations as they occur.

I hope that’s helpful.

Best wishes

Hugh