HDYO is an international organization with a great website where you can connect with the HD youth community worldwide and access their youth forums. You can ask questions in these forums which will be answered by doctors and counselors from around the world.
HDBuzz is full of articles about the latest international HD research, written in plain language so everyone can learn about the exciting research being carried out to help those impacted by HD.
Huntington’s Disease association (Auckland)
For those of you living in and around Auckland, find out about the latest news from HD Auckland.
Huntington’s outreach project for education, as Stanford (HOPES).
HOPES is a group of students and academics at Stanford University in the USA dedicated to making scientific information about HD accessible to the public. So head over to HOPES if you want to know more about the science of HD.
The official website for Enroll HD, a worldwide research study that almost everybody from a family affected by Huntington’s disease can join and participate in. Wherever you live in New Zealand, you can be a part of this exciting research. If you are keen to be involved or have questions, please contact Lisa Fraser on 021 896 662 or email her at firstname.lastname@example.org.
HD Youth Websites
What causes Huntington’s Disease?
Huntington’s Disease affects a person’s brain, caused by a fault in a specific part of that person’s DNA. DNA is like a book of instructions for your body on how to function; each specific instruction is called a gene. There is one gene, called the huntingtin gene, which everyone has, but in people that develop HD their particular instruction has been written down wrong, so it is not carried out properly. So in a person with the faulty huntingtin gene, their cells function incorrectly, especially their brain cells, which is why they experience lots of different symptoms.
HD is hereditary which means that each child of someone who has HD has a 50% chance of also getting HD. People can get HD at any age, but it usually happens in people between the age of 30 and 50 years old.
What are the symptoms of HD?
There are three main types of symptoms that people with HD get.
1) Symptoms that affect their movements, for example they have involuntary movements and problems with balance and walking.
2) Symptoms that affect their thinking and memory
3) Symptoms that affect their behavior, for example making them angry or sad, or making them act a certain way that isn’t how they usually act.
Every HD patient experiences different symptoms, some worse than others, and all starting at different times.
What treatments are available for HD?
There is currently no cure for HD, but scientists all over the world are working hard to try and find one. There are some treatments for certain symptoms of HD, for example medication to help with their movement symptoms, or to improve their mood.
How can HDYO-NZ help me?
HDYO-NZ ‘s mission is to support, educate, and advocate for young people impacted by Huntington’s Disease. The HDYO-NZ team is made up of young people from HD families, and scientists who study HD in the lab. So if you want to know more about HD or you want to talk to someone about their experience with HD who will understand what you are going through, we can help. We also want to make sure young people impacted by HD have all the support they need, so if you want to find out about local support in your town or city we will do our best to get you in contact with the right people.
Who else can I ask for help?
There are 3 main HD associations in New Zealand who can help you and your families, they are based in Auckland, Wellington, and Christchurch.
Auckland District Health Board HD Regional Service
Office phone: 09 307 4949 ext 25013
Auckland District Health Board Genetic Service
Office phone: 0800 456123