COVID-19 information and advice hub

We’ve all seen the headlines about COVID-19 (coronavirus). Our priority is supporting anyone affected by Huntington’s disease. We have gathered information on these pages from official UK government and public health sources. At times like this, it is vital to only share information that has been approved by official sources.

 

What is COVID-19?

COVID-19 is an illness that can affect your lungs and airways. It's caused by a virus called coronavirus. It is a virus strain, first identified in Wuhan, Hubei Province, China that has spread in people since December 2019.

The most common symptoms of coronavirus (COVID-19) are recent onset of:

  • new continuous cough and/or
  • high temperature
  • loss of, or change to, your sense of smell or taste

As with new viruses, researchers around the globe are working hard to understand COVID-19. Similar viruses are spread through respiratory droplets produced when an infected person coughs or sneezes. COVID-19 may spread when people are carrying the virus but are not showing any of the symptoms (cough, high temperature). People are thought to be most contagious when they are most symptomatic (the sickest).

 

How can I help stop the spread of COVID-19?

There are things you can do to help reduce the risk of you and anyone you live with getting ill with COVID-19:

  • Wash your hands with soap and water often – do this for at least 20 seconds
  • Use hand sanitiser gel, if soap and water are not available
  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • Put used tissues in the bin immediately and wash your hands afterwards
  • Do not touch your eyes, nose or mouth if your hands are not clean 
  • Wear a face mask where relevant
  • Only get your information from official sources
  • Remain positive – it can be worrying to read about the spread of COVID-19 but following UK Government and Public Health guidance will help you stop the spread of the virus 

 

Is there a treatment?

Researchers around the world have been working on a vaccine for COVID-19 which has now been approved for use in the UK. 

Everyone over 16 years of age is eligible to have two doses of the vaccine, those aged 12-15 are currently being offered a first dose. A booster dose is also available to people aged over 18 years or those that are younger and meet certain criteria who had their second dose at least three months ago. You should make an appointment yourself or attend a walk in vaccination centre to receive your vaccinations / booster.

A third dose is also available for people with weakened immune systems or a condition that increases their chances of of getting infections which could include some people affected by Huntington's disease. You will be contacted by your doctor if you are eligible for this who will provide details of how to book an appointment.

From 16 December, the NHS will be offering new antibody and antiviral treatments to people who have tested positive with COVID-19 who are at the highest risk of becoming seriously ill. Huntington's disease has been listed on the NHS website as being one of the diseases eligible for treatment. These treatments can help some people manage their COVID-19 symptoms and reduce the risk of becoming seriously ill. You can find out more here.
 

Is the vaccination safe?

The coronavirus (COVID-19) vaccine has been shown to be safe and effective in clinical trials and gives the best protection against coronavirus.

The COVID-19 vaccination is safe for those affected by Huntington's disease. Learn more about this here

On the importance of vaccination, Chair of the Huntington's Disease Association Board of trustees and Consultant neuropsychiatrist at a large clinic for people with Huntington's disease, Professor Hugh Rickards has the following message to share:

"I want to ask you to prioritise COVID vaccination for you and all your families and carers as soon as you can. I understand that some of you are nervous about vaccinations for yourselves and your loved ones, but the real risks of COVID are far greater than any theoretical risk from vaccination."

If you have already had COVID-19 and have antibodies, medical advice is that you should still have the vaccine.

Many of the population have now had at least two COVID-19 vaccinations. We know that the vaccine can make some people feel unwell for a couple of days after and so we’d make the following recommendations for people with Huntington's disease who are having the vaccine for either the first or second time - 

  • Take regular paracetamol for 48 hours after the vaccination unless there’s a reason that you are not able to take paracetamol. This should be at the normal dosage (which is usually one gram four times daily). The aim of this would be to reduce signs of flu-like illness.
  • If you normally struggle with swallowing, take extra care with your eating for a couple of days. Think more carefully about your eating position, food consistency and maintaining a quiet environment for eating.

These are all things that we’d want you to do if you were feeling unwell with the flu generally but they are a sensible precaution in the 48 hours after vaccination.

You may have seen in the news about people who responded adversely to the vaccination. This was due to them having a history of significant allergic reactions. The medicines and healthcare products regulatory agency (MHRA) has now updated its guidance to inform that any person with a history of immediate-onset anaphylaxis to a vaccine, medicine or food should not receive the Pfizer/BioNTech vaccine. If you have significant allergies, you should discuss the vaccine with your G.P. A second dose of the Pfizer/BioNTech vaccine should also not be given to those who have experienced anaphylaxis to the first dose of Pfizer/BioNTech vaccination.

The Association of British Neurologists (ABN) has produced some guidance on vaccination for COVID-19 and neurological conditions which can be found on their website here.​

If you have any concerns about getting the vaccination, please discuss this with your G.P.

 

Current COVID-19 guidance

With guidance changing frequently, it is important that you follow official government guidance (England and Wales) at all times to keep you and those around you safe. 

 

You will have heard the terms social distancing, self-isolation and shielding used a lot at the moment. All are very important in order to protect you and others from COVID-19 but what are they, and which should you be doing? Find out more below.

What should you do?

COVID-19 support and resources

COVID-19 and the Huntington's Disease Association