Frequently Asked Questions (FAQ’s)
There are a number of question that you may have about Huntington’s Disease, The NDIS and Huntington’s Victoria.
Below are a collection of questions and answers that may provide some further insight or answers to those questions you may have.
The team members at Huntington’s Victoria have also answered some of the more common questions that are asked about Huntington’s Disease in this video featured to the right.
If you have a question that you feel has not been covered by either our video or the the questions and answers below, please do not hesitate to use the Tideo webchat function at the bottom corner of your screen to get into contact with one of our friendly and helpful staff members so they can assist in your query.
Q: Can you develop Huntington's Disease if both of your parents don't have the gene?
A: Huntington’s disease is passed on by a dominant gene, so usually it can be said that if one parent has it then each child has a 50% chance of having it too. So, if neither of your parents have the disease, the odds are that you won’t either because you can’t pass on something you don’t have.
Q: If I have HD and I have children will they get Huntington’s disease?
A: If you have Huntington’s disease &/or are gene positive for Huntington’s disease and have conceive children naturally, then each child (pregnancy) will be at 50% risk of inheriting the Huntington’s gene and developing the disease.
Q: If my sibling has Huntington’s disease does that mean I won’t have it?
A: Each child of an affected parent has their own 50% risk of inheriting the faulty gene for Huntington’s disease. This means that your sibling’s gene status does not increase or decrease your risk of inheriting the gene and disease from your parent.
Q: Does Huntington’s disease affect only men or women?
A: Huntington’s disease affects both men and women. The gene responsible for Huntington’s disease is not linked to the gene that is responsible for determining your sex.
Q: Is there anything I can do to stop Huntington’s disease?
A: Currently there is no cure or targeted treatment for Huntington’s disease. However, research strongly informs us that keeping yourself physically, mentally and socially active can help delay the onset of symptoms.
Q: My mum had Huntington’s disease. If I get it, will it be the same?
A: The symptoms of Huntington’s disease present differently across individuals, including between family members. Your mother’s experience of Huntington’s disease is likely to be different from your own, as could the age of onset. This is partly due to the variation in the presentation of symptoms of the disease, but also partly due to how we are learning more and are better at treating and supporting those who are gene positive.
Q: I know a family member who I am worried about, I think they have symptoms but they won’t talk about it. What should I do?
A: Some find it very difficult to talk about what might be happening for them, so psychologically they build a wall to protect themselves from subjects that they find overwhelming or to hard to face. This might be what is happening to the person you know and so they won’t engage in conversation. We also know that HD affects the brain and how we think, evidence demonstrates that for some people they are unable to recognize the symptoms s as they have lost their ability to reflect on themselves or their behavior. This could be part of why they will not talk about it.
Try not to push the person into talking about it, but rather find other sources of support and care that are acceptable and safe in order for them to engage with assistance. Please do not hesitate to reach out to Huntington’s Victoria for further advice and support if you need it
Q: I am at risk of Huntington’s disease. How do I find out if I have the gene?
A: To find out if you have inherited the Huntingtin gene, you need to have genetic testing, specifically what is called “predictive testing”. These test are conducted through genetic counselling services – Predictive Testing Clinics. You can find out more about these on our website here. Testing is covered by Medicare so you do not have to pay. Your GP will be able to provide a referral for you to access this process.
Q: Is there medication to assist with the symptoms?
A: Currently there is no Huntington’s disease treatment, medication or tablet that will “cure” HD. There are, however, medications that can help manage and reduce the impact of symptoms. Huntington’s disease specialists are available and can assist with providing you with information on the most appropriate management for your symptoms as your disease progresses.
Q: I am gene positive, what should I be aware of with my health and wellbeing?
A: If you are gene positive, I’m sure you are aware that reducing your stress levels is an important factor in looking after your health and wellbeing. Therefore, we would recommend that you choose mental and physical activities that enhance relaxion and enable you to complete activities that interest you as well as achieve your personal goals.
Q: I am at risk, are their limitation to the activities I can be involved with?
A: With all of us, there are limitations based on our capacity and abilities. As a first step, we would encourage you to engage in activities that maintain/improve your cognitive abilities, in addition to your physical capacity. We would also recommend that you do not choose activities that set you up to fail so please seek advice from experts in the field.
Q: I am a carer or friend of a loved one with HD, how do I look after myself?
A: As a carer and/or a friend of a loved one, you would always put others need before your own. We would strongly recommend that you take some time to identify what you enjoy and enables you to relax. Once you have identified these activities, the next step which is a hard one, is scheduling in time to focus on your own health and wellbeing. Here are some ideas and strategies you can do to look after yourself.
Q: I am at risk of Huntington’s disease, how did the discovery of the HD gene impact me?
A: The discovery of the Huntington’s gene enabled the community to identify Huntington’s disease as a genetic condition. Prior to this discovery, those who had been diagnosed with HD were unsure how they developed Huntington’s disease. As a result of the discovery, you can now access a genetic test that will identity whether you have the mutated gene.
Click here to watch Jacqui’s story which may be relevant to you.
Q: I am gene-positive, how did the discovery of the HD gene impact me?
A: We all have the Huntingtin gene. If you have a parent with the mutated gene, you have a 50% chance of inheriting this faulty gene. Since the discovery of the gene there has been significant progress in understanding HD and the proactive steps you can take to either delay onset and/or reduce the impact of symptoms.
For more information on genetics, please visit our website here.
Q: I am symptomatic of Huntington’s disease, how did the discovery of the HD gene impact me?
A: Prior to the discovery of the gene, a HD diagnosis was predominantly determined based on the presentation of involuntary movements. The discovery of the gene enabled more targeted research and understanding of the presentation of other symptoms of HD such as the cognitive and psychological symptoms in diagnosing HD. In addition, there is now an evidence-based understanding of HD and the proactive steps you can take to maintain your existing function and/or reduce impact of symptoms.
Q: I care for a loved one with Huntington’s disease, how did the discovery of the HD gene impact me?
A: Having a lack of knowledge can often make you feel helpless; the discovery of the gene provided carers and loved ones with knowledge to regain their power to make informed decision. In practical terms, it provided them with the questions that they needed answers to, and they were also able to trace the family history of this genetic condition.
Living with Huntington’s Disease
Q: Do I have to stop driving if I am diagnosed with symptoms of HD? Will they suspend my license?
A: The simple answer is not necessarily. Many people who are diagnosed with Huntington’s disease are still safe to drive. However, Huntington’s disease is a progressive condition and it will reach a point where driving can be dangerous for you and others on the road. When you reach this point your treating GP and/or specialist will discuss options with you that may include a referral to an Occupational Therapist for a driving assessment.
Q: At what age will I start to develop symptoms?
A: The answer to this question cannot be given as an exact. In general, the onset and presentation of symptoms varies between family members.
Q: What things can I be doing now to protect my wishes for my future?
A: It is important for everyone to put plans in place for their future. This can include advanced care planning, Enduring Power of Attorneys, Wills etc. The Office of the Public Advocate advises for all of us. More detailed information and guidelines can be located on their website. www.publicadvocate.vic.gov.au
Q: Do I need to tell my workplace about Huntington’s disease?
A: Many are worried about discrimination in the workplace. You do not need to disclose your genetic information to your employer, nor do you need to tell them about a diagnosis of Huntington’s disease as long as it does not impact on your work, occupational health and safety. You can read more about this here.
Q: Can I have children without the risk of them developing Huntington’s disease?
A: There are a number of different options available to you if you would like to plan a family without the risk of Huntington’s Disease. One such way is through IVF-Pre-Implantation Genetic Diagnosis (PGD) in which the embryo is screened for the faulty copy of the Huntingtin Gene before it is implanted. To learn more about this, and about other family planning options click here
Q: I am symptomatic, is it safe for me to engage in mental and physical activity?
A: If you are symptomatic of Huntington’s disease, we would encourage you to participate in activities that enhance your overall wellbeing. In order to ensure that you are safe, please seek the assistance of allied professional who can conduct assessments and make recommendations on appropriate activities that are tailored to your abilities. This site provides some useful resources on health and wellbeing
Q: I am at risk, is it common to think everything I do means I am symptomatic?
A: The short answer is absolutely, it is normal. If you come from a Huntington’s disease family, it makes sense for you to relate any normal actions or behaviours to Huntington’s disease. This circumstance is known as symptom watching. Please be reassured that everybody has times when they are not functioning at the level they want to, and they do not come from a Huntington’s family.
Q: I am gene positive, will I show the same symptoms as my parent.
A: The simple answer is it is up to you. You have access to more knowledge and information than your parents did, and we now know that lifestyle choices do make a difference to age of onset and how symptoms present themselves. The age of onset and presentation of Huntington’s disease symptoms can be different for every individual – even between family members. Read more abour practical options to improving your health here.
Q: I am symptomatic, does that mean there is nothing else I can do to help myself?
A: The decision is up to you. There are strategies and techniques that you can apply that will help you to delay the severity of the symptoms. Individuals can live a life of independence and dignity if they choose to manage their symptoms. In addition, it is important that you look after your overall brain health.
Q: I am a carer/friend for someone with Huntington’s disease, does Huntington's disease make them lazy?
A: An individual with symptomatic Huntington’s disease is not lazy. However, they can experience difficulties in initiating activities due to changes in brain health. If you’re unaware of these changes it is understandable to consider that the person is being lazy. In reality, these changes make it difficult for the individual with Huntington’s disease to self-initiate independent action and/or to respond to requests from others. It is important to remember, the result of the changes to the brain isn’t anyone’s fault and there are strategies that you can implement to help understand why this is happening and how to manage the process.
Q: I am at risk of Huntington's disease, is it normal to feel like I'm not in control?
A: For any of us dealing with the unknown it can be unsettling for anybody. The good news is the power is in your hands in relation to how you choose to either maintain or regain your control. You will always find what you seek; in other words, if you expect everything to be bleak then that’s what you will find and if you are looking for constructive ways to move forward, then that’s what you will discover. It may seem simple to say but we acknowledge in practice emotionally it can be a quite an intricate process to shift your focus. We would recommend that you create your own personal toolbox with the purpose of providing you with practical and self-affirming ways of responding to times of uncertainty. If you need assistance in creating your own toolbox please do not hesitate to reach out to your team at Huntington’s Victoria. As a starting point we would recommend you watch Cat Martin’s recent presentation of her lived experiences of “Coping with the ups and downs of HD”
Q: I am gene positive of Huntington's disease, I’m not sure how to speak to people about my status.
A: It is difficult to talk to someone who has no background and knowledge about Huntington’s disease. There will be times in your life where you will find yourself in a circumstance where you will need to explain Huntington’s disease to others. Please do not be nervous about how you explain Huntington’s disease to others. What you cannot control is other people’s reactions, all you can do is try and educate them to the best of your ability. The more you explain Huntington’s disease to others around you, the more prepared they will be to assist you when you need it most. The decision to talk about Huntington’s disease is entirely up to you. If you decide that you want to start talking about Huntington’s disease and you feel unsure how to do so, please reach out to the team at Huntington’s Victoria to alleviate some of your concerns and so we can provide you with as much support as possible. Please find a link to a recent panel discussion on members of the Huntington’s community experiences of talking to others about Huntington’s disease here.
Q: I am symptomatic of Huntington's disease, will it have an impact on my relationships?
A: Once you are symptomatic, it will have an impact on you as an individual and therefore on those around you who care about you. The good news is, you can have control through the decisions you make whether that’s a negative or positive impact. Preparation is your friend. What this means in practical terms is you need to find out as much as possible from credible sources about the symptoms of HD, their presentation and the steps you need to put in place to manage those symptoms. If you are comfortable in doing so, please include your loved ones in this exploration of information and understanding. Please remember knowledge is power and will help you make the adjustments in your relationships as you become symptomatic. Kelly Atkins, who some of you may be familiar with, recently presented on Navigating Relationships where she discusses symptoms and how if not managed, they can impact on relationships.
Q: I am gene negative of Huntington's disease, why don’t I feel a sense of relief?
A: Regardless of your gene status, you are impacted by Huntington’s disease by the mere fact that it is genetic and therefore affects your family unit. Being gene negative or a carer does not mean that this fact is no longer relevant to you. If anything, it is more pertinent because you become hyperaware of the uncertainty for other family members. Unfortunately, our gene status is not in our control, it is biological factors that create healthy and faulty genes. Your gene negative status will have an impact on your role within your family, but it is up to you what that role looks like and we recommend that you create your personal toolbox to assist you. Please remember, you are not alone as recently demonstrated at the HDYO congress with members of the HD community sharing their lived experience.
Supports and Services
Q: What is the NDIS?
A: The NDIS stands for the National Disability Insurance Scheme. Through this scheme, individuals with a permanent disability are able to access funding to meet their support needs, in order to maintain independence and enable a quality of life. For further information please refer to the NDIS section on the Huntington’s Victoria website here.
Q: Am I eligible for the NDIS?
A: To be eligible for NDIS you need to meet the following criteria:
- Aged between 7 and 65 years old
- An Australian Citizen or have a permanent or special category visa
- Have a significant and permanent disability that effects your day to day living
For further information please refer to the ‘Am I eligible?’ page on NDIS website:
Q: How do I access the NDIS?
A: To access funding and services, the NDIS requires a completed access request form, and supporting evidence of your Huntington’s disease. Huntington’s Victoria has a team who are experienced and able to support and guide you through this process, and we encourage you to contact our Information Service on 03 98186333
Q: I have some specific questions and concerns about Huntington’s disease. Is there anyone I can speak to about them?
A: Huntington’s Victoria Information Service is available from Monday-Friday during business hours via web chat, email and the telephone to discuss any questions and concerns you may have regarding HD. Our service is confidential and our team are qualified and experienced.
Q: I need support – can Huntington’s Victoria help me?
A: Yes! We are able to support anyone in the Huntington’s community depending on your needs at any given point in time.
- Our Information Service is your first point of contact and is a gateway to additional support within Huntington’s Victoria.
- For those community members not eligible for NDIS and requiring additional support Huntington’s Victoria can provide assistance through our Case Management Service.
- We provide NDIS Pre-Planning Support, where we can help you apply to the scheme and support you with your initial planning discussions with NDIS.
- For Individuals who have an NDIS plan Huntington’s Victoria offers Support Coordination and Plan Management
We are able to provide education sessions through the Huntington’s Victoria Education Program about HD/the impacts of HD as well as sessions tailored to a specific need or request. We provide access to an in-house Counsellor to support our community members through the impacts of Huntington’s disease.
Q: Is there anyone I can speak to on an ongoing basis to help me manage with the stress and worry of Huntington’s disease?
A: Yes. If you would like counselling then please contact our office on 03 9818 6333 and ask to speak with our information service Our information service will help to determine if counselling is what would be most helpful, and refer you to our sessional Family Therapist/counsellor. For further information about this service click here.
Q: I am at risk, when is the right time to reach out to Huntington's Victoria?
A: There is no right or wrong time to contact Huntington’s Victoria. We understand that when you discover that Huntington’s disease is a part of your family history, that it can be a confronting experience. However, having access to information from a credible source will help to demystify the impacts of the disease and assist you put strategies in place to take control of your own life.
Only you can decide when the best time is to reach out.
Q: I am gene positive; how can Huntington's Victoria help me?
A: HV is available at any point in time to assist you with living with the impacts of HD. If you are gene positive, there are strategies that you can put in place to manage your own health care. Therefore, we would encourage you reach out to Huntington’s Victoria to have access to reliable information and expert staff who can assist you to make informed decisions.
Visit this page for more information
Q: I am symptomatic, are there services available for me through Huntington's Victoria?
A: Huntington’s Victoria has a range of services that are available for you and your family to help you through any stages of HD. Whether it is information, counselling, case management or NDIS support coordination, these services aim to work with you to achieve your goals and maintain an active and meaningful life. As a starting point, we’d recommend reaching out to our Information and Support Services.
Q: I am a carer or friend of a loved one with HD, what advice can Huntington's Victoria provide for me?
A: Supporting a person living with HD is never easy and there will be a time where some extra supports and services will be helpful. HV can provide you information and advice on strategies to maintain your wellbeing as a carer/friend and we can link you to services that will be beneficial to you and your loved one.
Q: I heard there are clinical trials in Huntington’s disease. What is a clinical trial?
A: Clinical trials are research investigations in which people volunteer to test new treatments, interventions or tests as a means to prevent, detect, treat or manage various diseases or medical conditions. The purpose of trials is to find new and improved methods of treating, screening for and diagnosing different diseases.
Q: Can I participate in a clinical trial?
A: Information about participating in trials is determined by those conducting the trial. This varies so it is best to ask your Huntington’s disease treating team what trials there are currently that you meet criteria for and can participate in. If if you are not part of a clinical trial, this does not mean you are missing out on a cure. The results from each trial will be of benefit to all of the Huntington’s disease community.
Q: Other than clinical trials, is there any local Huntington’s disease research happening?
A: The Huntington’s Research Group of Victoria. is a very active research group here in Victoria, who consult and research locally, nationally and internationally. These researchers are from the Howard Florey Institute of Neuroscience, Monash University and the University of Melbourne. Some of the HD researchers presented at Huntington’s Victoria Community Conference.
You can watch their presentations here.
Q: Can I donate my brain to HD research?
A: Yes, you can donate your brain specifically to HD research. You can find out more information about that here
Q: What events do you run?
A: Huntington’s Victoria host a number of standard events throughout the year in collaboration with our community. These events include the HD Awareness month (Light It Up 4 HD, Go Blue on May 22, In Memory), our Community Conference and the Gala Ball.
You can stay up to date with our news and events here.
Q: Can I get involved in your events?
Q: I have Huntington’s disease. Can I come to the ball?
A: All of the events at HV are panned by our community, for our community. The presence of our community is what makes our events and we encourage you to participate as little or as much as you are comfortable with.
Q: What is LightItUp4HD?
A: Light It Up 4 HD is a global awareness raising initiative where landmarks across Victoria (and the world) are lit up in blue during the month of May to help raise awareness of Huntington’s disease. Huntington’s Victoria was the first Huntington’s association in Australia to join this meaningful campaign in 2017.
Q: Do I need to fundraise to be a part of Go Blue on May 22?
A: No you don’t! Go Blue on May 22 is a fun and easy way to get involved and raise awareness of Huntington’s Disease in your local community.
Q: I want to host a fundraiser do you have any suggestions?
A: There are so many options that you can choose from, from morning teas, in celebration (in lieu of gifts for birthdays, anniversary, special occasions/events), fun run, trivia night. Your event doesn’t need to be big or time intensive.
Q: Can I make a donation in memory of someone?
A: At Huntington’s Victoria we believe strongly in remembering those members of the community we have lost. There are a number of ways you can do this, one of these is through donation. Some people choose to make a donation on a loved one’s birthday, wedding anniversary, anniversary of their passing or another significant date.
Q: Can I have my loved one remembered as a part of your In Memory Campaign? Do they have to be Victorian?
A: Our In memory campaign is available to anyone from the Huntington’s disease community who has lost someone. You can contact us so we can include your loved one.