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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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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.

Carer self-care and wellbeing workshops

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

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

Isolation tips and support for young people and their families 

As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.