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Presymptomatic Testing – The Consumer Experience

Presymptomatic Testing – The Consumer Experience 

This booklet provides firsthand experience from three people about their decision to either test or not test for the HD gene. 

Genetic testing is not for everybody. Each person has the right to make their own decision. Reading the stories shared in this booklet may help you to make the choice that is right for you. 

Suzanne relates why she has decided not to be tested despite a history of HD in her family. Irina outlines why she decided to go ahead with testing. She deals very frankly with the emotional stress that she had to deal with after testing positive to the HD gene. Finally, Michele talks about testing negative to the gene, but still feeling concern for the rest of her family. 

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Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

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