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.
COVID-19 is a new 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.
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).
Everyone must stay at home to help stop the spread of COVID-19.
You should only leave the house for 1 of 4 reasons:
If you or a loved one has Huntington's disease and must interact with NHS staff or emergency services, you can use our 'COVID-19 letter for NHS and emergency services' to explain what Huntington's is and how COVID-19 can affect someone with the disease.
Do not leave your home if you have symptoms of COVID-19 or live with someone who does.
This is called self-isolation.
If you are self-isolating, you must:
You can use your garden, if you have one.
If you have symptoms of COVID-19, you'll need to self-isolate for 7 days.
After 7 days:
You do not need to self-isolate if you just have a cough after 7 days. A cough can last for several weeks after the infection has gone.
If you live with someone who has symptoms, you'll need to self-isolate for 14 days from the day their symptoms started. This is because it can take 14 days for symptoms to appear.
If more than 1 person at home has symptoms, self-isolate for 14 days from the day the first person started having symptoms.
If you get symptoms, self-isolate for 7 days from when your symptoms start, even if it means you're self-isolating for longer than 14 days.
If you do not get symptoms, you can stop self-isolating after 14 days.
IMPORTANT INFORMATION - Clarification of COVID-19 ‘high-risk’ Huntington’s texts/letters
If you're at high risk of getting seriously ill from COVID-19, there are extra things you should do to avoid catching it.
If you need help getting deliveries of essential supplies like food, you can register to get support.
If you live with someone who is 70 or over, has a long-term condition, is pregnant or has a weakened immune system, try to arrange for them to stay with friends or family for 14 days.
If you have to stay at home together, try to keep away from each other as much as possible.
For more information visit https://www.nhs.uk/conditions/coronavirus-covid-19/
You still need to stay at home when you finish self-isolating, but you can go out for essential trips such as buying food.
Read the COVID-19 advice for everyone.
During this time, you may be bored, frustrated or lonely. You may also feel low, worried, anxious, or be concerned about your health or that of those close to you. Everyone reacts differently to events, and changes in the way that we think, feel and behave vary between different people and over time. It’s important that you take care of your mind as well as your body and to get further support if you need it.
Some important things to consider if you feel your mental health may be wavering include -
Comprehensive guidance on mental wellbeing has been published by Public Health England. The full guidance document can be found at Guidance for the public on the mental health and wellbeing aspects of coronavirus (COVID-19)
Researchers are currently working on a vaccine for COVID-19 but at present there is no specific treatment for COVID-19 and antibiotics do not help, as they do not work against viruses. If you follow official guidelines as above it will help to alleviate symptoms and minimise the risk of spreading the virus.
There is so much for families to think about during these unpredictable and turbulent times and it’s important to remember how children and young people are affected. We understand that children are fearful of passing on the virus to other family members and how this could impact on their health. Though our instincts can be to shield and protect our children from scary things, it’s important to talk openly and honestly about COVID-19 to ensure that children have a forum to express their fears so you can help manage them.
Even though our Youth Engagement Service is unable to provide face-to-face visits, it is still operating from the office. You can email, call or text James to discuss any concerns you have for your children and he can offer virtual support through Skype should anyone want to connect with him. This is a link for young people from BBC News Round explaining COVID-19.
Email – firstname.lastname@example.org
Mobile – 07718 424905
James is also hosting daily group video calls for children and their families to offer support and advice. Click here to find the call that's for you and don't miss out on the quiz every Friday!
Currently, our head office is functioning as usual. We are open 9 am – 5pm for support, information and advice. As people with Huntington’s disease are considered in the vulnerable category, for their protection, our Specialist Advisers are postponing all house calls and face-to-face visits. This is to try and minimise the risk to people affected by Huntington’s. You can still access our Specialist Advisers via phone and other online communications. We are here to support anyone affected by Huntington’s disease and will continue to do so.
Huntington’s Disease Association events
Due to the current circumstances, we have had to take the decision to postpone our Understanding Huntington's disease - a certificated course for professionals on the 19-21 May 2020. If you have booked onto this please do let us know and we will work with you to minimise any inconvenience.
Unfortunately, many fundraising events have been cancelled or postponed due to the virus. This includes –
Please use the links above to visit each of the event organiser’s pages for more information.
As the leading organisation across England and Wales supporting people affected by Huntington’s disease our work continues – we will continue to support people with Huntington’s disease and we ask our fundraisers to continue to show your support by organising alternative fundraising activities. Please get in touch with our fundraising team to discuss other ways in which you can fundraise for our work. We are hugely grateful for your all you do and your support is more vital to us than ever before in the current climate.
Fundraising is extremely important and helps us provide our Huntington's disease services. There are many ways you can help us raise money during this difficult time which would be much appreciated.
If you are caring for someone affected by Huntington’s disease please follow all the steps listed above. You can also find more in-depth information on COVD-19 and caring via our ‘Tips for carers on protecting those with Huntington's from COVID-19’ infographic.
There are lots of official resources where you can access additional advice –
If you are affected by Huntington’s disease and are concerned about COVID-19 or would like further advice, please contact us on 0151 331 5444 or email email@example.com