(03) 9818 6333 / 1800 063 501 (Toll Free) [email protected]

Huntington’s Victoria is still open for business as usual between 9am-5pm. All programs are still running, home visits are not permitted during this time.

What is Covid-19?

COVID-19 is a disease that causes respiratory symptoms similar to the flu. It’s caused by a virus called coronavirus. As a community it is important that we access reliable information about keeping safe and what we can do to reduce the spread of Covid-19.

Could I have Covid-19?

If you have a diagnosis of Huntington’s disease, this does not necessarily place you at greater risk of contracting Covid-19 compared to your peers. However, you may be at greater risk of developing more serious illness, if your respiratory system is already compromised such as having swallowing problems and/or risk of aspiration that people with advanced HD may experience. You may also find it more challenging to implement the important strategies of protecting yourself and others (hand washing, social distancing and isolation). If you believe that you, or a loved one is at greater risk then it is important that you discuss how you put the measures in place to protect yourselves. If you are living by yourself and are having minimal opportunities to access support from family or friends contact us to discuss your situation further

Vaccination

The Covid-19 vaccines are safe and effective. They are proven to prevent illness relating to Covid-19. Before accessing the vaccine, you should speak to your GP or HD specialist to help you make the decision whether or not to get the Covid-19 vaccine.

All Victorian citizens over the age of 12 are eligible for a Covid-19 vaccine. This includes those who are gene positive and/or symptomatic of Huntington’s Disease. There is no current evidence that suggests that any Covid-19 vaccine will impact the onset of HD symptoms or progression, and the Covid-19 vaccine does not alter your DNA. Speak to your GP or HD specialist if you have further concerns regarding symptom onset or progression related to vaccines.

Where can you access Vaccines

Those living in residential settings of 2 or more people with a disability can be vaccinated at their residence by a GP or vaccination provider. They can also go to a vaccination clinic or GP. Anyone with a disability not in a residential setting of 2 or more people can go to a GP or vaccination clinic.

Source: https://www.health.gov.au/initiatives-and-programs/covid-19-vaccines

Impact on HD Research Trials

With many countries’ entire healthcare systems turned over to providing care for people with Covid-19, and many doctors and nurses diverted from research into frontline care, an impact on Huntington’s disease clinical trials is inevitable. However, all those involved are doing everything they can to minimize the impact and carry on with whatever trial activity they can.

Some trials may still be enrolling new patients, while many will be forced to pause recruitment of new participants and focus on continued care of existing patients. Many sites may convert onsite trial visits into virtual communications or phone calls, or postpone visits until it is safer to carry them out in person. These decisions are usually determined locally depending on the public health measures.

What does COVID-19 mean for Huntington’s disease families and HD research? – HDBuzz – Huntington’s disease research news.

Could I have Covid-19?

If you have concerns that you may be displaying symptoms of Covid-19 then you are encouraged to complete the online assessment tool which will inform you as to whether you meet the criteria to be tested or if you should seek medical help. 

Whilst some of the symptoms of Covid-19 may be similar to HD such as fatigue there are a number of other symptoms that when experienced together, would not resemble symptoms of HD.  These include:

  • Fever
  • Dry cough
  • Sore throat
  • Shortness of breath.

If you are experiencing difficulty breathing, chest pain or numbness please contact 000. 

If you have further questions about Coronavirus you can also contact the National Coronavirus Helpline on 1800 020 080. This service is available 24/7

Ways to Combat Lockdown Fatigue

Lockdowns can be very physically and mentally draining. Lockdown fatigue can be described by a state of exhaustion due to the impact of prolonged periods of quarantine and isolation. The continued lack of uncertainty and change can leave us feeling anxious, stressed and depressed.

Symptoms of lockdown fatigue can be:

  • Sadness
  • Frustration
  • Anxiety or Fear
  • Physical burnout
  • Difficulty focusing
  • Lack of motivation
  • Difficulty maintaining a routine
  • Difficulty sleeping

Lockdowns will eventually end, but in the meantime, here are some tips to help combat the impact of lockdown fatigue:

  • Maintaining a bedtime routine, try and go to sleep at the same time every night and wake up around the same time every morning.
  • Moving your body can help alleviate stress, so being active if possible is a great way to improve your mood.
  • Eating well can also improve your overall mood and energy levels
  • Stay connected to those you love
  • Seek professional mental health support, if you would like us to help you get in contact with someone for professional support, contact us.

For more information about how to manage your mental health during lockdown, visit:

Managing your mental health while in self-isolation – Beyond Blue

Access to HD specialist services

If you have an upcoming appointment with a HD service such as with your HD specialist or with a Genetics Service for predictive testing it is advisable to contact the clinic to confirm that outpatient appointments are still being provided in the hospital.  Whilst you are able to leave home to access medical services, many services during this time are changing how they deliver services to limit risk of exposure to Covid-19.  It is advisable to confirm your appointment prior to attending.

For a list of the main HD clinics, genetic services and HD associations in Australia click here 

What happens if myself or my carer/member of my family have Covid-19

If you, or someone in your household is suspected or diagnosed with Covid-19 then you will be contacted by the Department of Health to self-isolate.  This means you must stay at home, and isolate away from other members of your household.  Staying at home means:

  • You cannot leave your home for food or other necessities. There are now established services that can bring you emergency relief if you do not have anyone else to bring and leave things for you at your door.
  • You cannot have visitors
  • You cannot go to public places including outside for exercise.

If you have HD and live by yourself and have a suspected case of Covid-19 contact Huntington’s Victoria so we can assist you to make sure you have access to any necessary services or supports during this time.

Latest Covid-19 Information Victoria

Link to latest Covid-19 restrictions in Victoria

Restrictions in Metro Melbourne and Regional Victoria are frequently being altered. For the most up to date restrictions click here:

https://www.coronavirus.vic.gov.au/coronavirus-covidsafe-settings

Link to latest Covid-19 Vaccine Information in Victoria for People with Disability 

https://www.health.gov.au/initiatives-and-programs/covid-19-vaccines/disability-sector/people-with-disability