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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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National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington's Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.