FAQS
Answers to some of your questions
Who can get Huntington's Disease?
Huntington's is not something you catch. Rather, it is passed down through generations. Every child conceived to a parent who has the Huntington's gene has a 50% chance of interiting it. (https://hda.org.uk).
Can I test for the Huntington's Gene?
Yes, a genetic test can show if you have the faulty gene. You can live with that gene for years without symptoms, but at some stage you will develop symptoms.
Is there a cure for Huntington's Disease?
No, sadly there is no cure, but symptons can be managed to improve your quality of life. However, there are several international clinical trials in process of finding an effective treatment.
What is juvenile Huntington's disesase?
Huntington's affects men and women alike. It usually developts between the ages of 30 and 50, but can start at any age. If symptoms develop before the age of 20, that is classed as Juvenile Huntington's disease.
Where can you get help?
There are 3 main HD associations in New Zealand based in Auckland, Wellington, and Christchurch. Otherwise, several other areas in New Zealand have Huntington’s Advisors available. If you’re in Auckland, then feel free to reach out to us. More Info
What are the main symptoms of HD?
Every person is different but there are three main types of symptoms that people with HD might get. These include symptoms that affect their:
* Movement: e.g. involuntary movements, unstable balance/walking
* Cognition: e.g. trouble with organisation, difficulty learning new tasks
* Mental Health/Behaviour
The examples provided are not limited to these. As stated, every person is different – they can have one or some symptoms, some worse than others and can start at different times of their HD journey.
What is the life expectancy for someone with HD?
The average initial onset for HD is between the ages of 30-50 years old but people can still get HD at any age. Because of this, life expectancy can vary between person to person. Many factors can impact this, and each person is different, so it is recommended to discuss this with your specialist throughout the journey.
Are there any support groups for families and/or youth affected by HD?
Our association endeavours to facilitate regular events that cater to the entire family. This includes carer days, youth outings, and fundraising events, which all give those affected by HD an opportunity to be amongst those who are in similar situations. If you would like to participate or just get more information, feel free to contact us and join our mailing list for updated event notifications.
Can I get Financial Support with my HD diagnosis?
Due to the nature of the disease, financial aid may be required to support you and your family/whanau during this journey. You may be able to receive financial support from the Ministry of Social Development (MSD) – what you can get depends on your overall living situation. The HDA can support you and/or your family whanau through the application process.
How can HDA help you
The HDA is an organisation that supports and advocates for individuals and families affected by Huntington’s Disease. We understand that this can be a very difficult journey, so we aim to make it as smooth as possible by ensuring you receive the right support services and medical attention, and by maximising quality of life.