- Huntington’s Disease Association of England & Wales
- Scottish Huntington’s Association
- HD Association of Northern Ireland
- Huntington Disease Association of Ireland
- Huntington Society of Canada
- Huntington’s Disease Society of America
- Huntington’s Disease Youth Organization
- International Huntington Association
- HD Buzz
- Huntington’s Outreach Project for Education at Stanford (HOPES)
- The Huntington Study Group (HSG)
- European Huntington’s Disease Network (EHDN)
- CHDI Foundation
- Huntington’s Disease Drug Works (HDDW)
The following videos and information guides are shared resources made available through many Huntington’s Associations across the globe.
Care Education Videos
Huntington Study Group – Care education videos
- Understanding Behaviour
- Caregivers Guide for Mid to Late Stage HD for Long Term Care facilities and In-Home Care Agencies
- Genetic Testing – International Protocol
- Care Giver Guide (American publication)
- Living Well with Huntington’s Disease – Community of Practice Framework
- Physiotherapy Guidelines
- Physicians Guide
- Loss and Grief in HD
- Standards of Care (UK Huntington’s Association)
- Testing For HD (American Publication)
- Superannuation and Insurance in HD
- Travel Insurance and HD
- Guide for Young People Kids 8-12 Years
- Guide for Teenagers Youth 13-17 Years
- Occupational Therapy for People with Huntington’s Disease: Best Practice Guidelines
Q: Can HD skip a generation?
A: Every child of a parent who carries the defective gene has a 50% chance of inheriting the gene. If your parent does not have the defective gene then you are not at risk of developing HD or of passing it on.
Q: There is a history of HD in the family. What does this mean for me?
A: Huntington’s disease is an inherited neurological condition which is passed down from parent to child. This means that if you have a parent with the defective gene then you have a 50% risk of inheriting the defective gene yourself. If neither of your parents have HD then you are not at risk of inheriting the defective gene.
Q: What is predictive testing?
A: In 1993 the Huntington gene was discovered which allowed for the development of a direct gene test. This means that you can find out whether you have the gene before the onset of symptoms. The predictive test identifies if the HD gene you inherited from your parent is faulty.
Q: I am at risk of HD. Should I be gene tested?
A: There is no right or wrong answer to this question. Making the decision to be tested is very difficult and not one to rush into. We recommend that you contact the Predictive Testing Program at the Neurosciences Unit to discuss this decision at greater length. They can be contacted on (08) 9347 6464
Q: I am currently at risk of HD and would like to know my gene status. Who should I speak to about this and what can I expect from the process?
A: If you are at risk of HD and would like to find out if you are gene positive then you will need to contact the Predictive Testing program at the Neurosciences Unit on (08) 9347 6464. As part of this process you will engage in some counselling sessions with a genetic counsellor. They will be able to provide you with further information on the program and details about what is involved.
Q: I have a grandparent with HD and my mother/father does not know their gene status. Can I still be tested even if they don’t know their gene status?
A: The answer is yes, however it is best to talk to the genetic counsellor at the predictive testing program about this as your gene status will have implications for your parent, particularly if you are found to be gene positive.
Q: I want to start a family but am at risk of HD. Can I still have children without passing on the gene and not know my gene status?
A: Fortunately with the development of IVF (in vitro fertilisation) and PGD (Pre Implantation Genetic Diagnosis),this allows you to conceive a child without the defective HD gene and not disclose your own gene status.
Q: I have tested gene positive. When can I expect to develop symptoms of HD?
A: It is impossible to predict exactly when you will develop symptoms. However, most people begin to show signs of HD between the ages of 30yrs – 50yrs
Q: If I am gene positive what does that mean for my children?
A: This means that each one of your children has a 50% chance of inheriting the defective HD gene.
Q: I have heard Huntington’s Disease is more prevalent in males. Is this true?
A: This is incorrect. The HD gene is on chromosome 4 which is a non-sex chromosome. Therefore it equally affects men and women.
Q: What is the prevalence of HD in the western world?
A: Statistics now indicate that HD has a prevalence of between 7-10 people per 100,000
Q: What is Juvenile HD?
A: Juvenile HD affects people under the age of 20 years and like the adult form is hereditary in nature. It occurs when the CAG repeat is expanded to over 60 repeats. Juvenile HD accounts for 3-10% of all HD cases in the western world.
Q: What is the predicted lifespan for someone with HD?
A: As HD is a neurodegenerative condition people typically live for 15 – 25 yrs following the onset of symptoms. It is difficult to determine when onset of symptoms occurs as symptoms may initially be gradual and subtle.
Q: Is there medication available to assist with my symptoms?
A: Yes, there is medication available to assist with managing symptoms of HD. Please see your health professionals for further information.
Q: Is there a cure for HD?
A: At the moment there is not a cure for HD. However a cure is being heavily researched both in Australia and internationally. http://www.huntington-study-group.org/
Q: Can the progression of HD be slowed?
A: Medication cannot slow the progression of HD, however maintaining an active lifestyle (e.g. regular exercise and mental stimulation) has shown, through research, to have a positive impact on the progression of HD.
Q: Now that I am diagnosed does this mean I will lose my drivers licence?
A: Not necessarily, however you will have to inform DPI that you have a neurodegenerative condition. At some stage you may require an Occupational Therapist Driving Assessment.
Q: Is it common for GPs to have trouble recognising the symptoms of HD?
A: As HD is a rare condition, your GP may not have come across this before. Unless HD is known in your family, this is not something GPs would routinely look for as there can often be other explanations for your symptoms other than HD. You should always tell your GP of any family history relating to HD.