News and events News Coronavirus Update - 30th March 2020 Our charity is facing increasing demand for support from people affected by genetic haemochromatosis due to the coronavirus outbreak. Please consider helping us with a donation. Every little helps us, to help others. Thank you. Please select a donation amount: * £15 £25 £50 Other Set up a regular payment Donate Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here - read on for further details about : What is coronavirus? What are the symptoms of coronavirus? Why should I self-isolate or practise social distancing? What should I do if I think I’m infected with coronavirus? How do I protect myself and my family? Scroll down this page for further updates, including : Are people with genetic haemochromatosis at "higher risk" of coronavirus infection? If people with genetic haemochromatosis catch coronavirus, are they at increased risk of complications? I have genetic haemochromatosis, is that an "serious underlying health condition"? I am pregnant, what is the latest advice regarding coronavirus? I have an appointment to attend hospital for a scan or venesection, should I go? My venesections have been cancelled for <<months>>, can I be a blood donor? How can I take care of my mental health, whilst self-isolating or staying at home? I have GH and need to home-school my kids, where do I start? I have received a UK government/NHS letter saying I am extremely vulnerable and must self-isolate for 12 weeks, why? I am waiting for a liver transplant, what is the current advice for me? I have advanced liver disease, hepatitis or have already received a liver transplant, what is the current advice for me? I have diabetes as a result of genetic haemochromatosis. Am I at "very high risk"? What should I do to keep well? This page was : updated at 9am on Monday 30th March with additional resources for maintaining good mental health See earlier updates here We hope to provide further updates periodically as our understanding of this issue increases. You can get the latest updates here : https://www.haemochromatosis.org.uk/cornonavirus As of 24th March, everyone should #StaySafeStayHome - please STAY AT HOME. For more details, please read this important update from UK government (published 23rd March) I'm feeling okay - why should I stay at home? Everyone should stay at home, unless you are a key worker or you are seeking medical assistance or essential basic food supplies. This short video from Belfast Health & Social Care Trust explains why. #StayHomeSaveLives Are people with genetic haemochromatosis at "higher risk" of coronavirus infection? No. Genetic haemochromatosis itself does not make someone more at risk of infection. The greatest influence on our infection risk is our own behaviour - so STAY AT HOME and practise social distancing. If people with genetic haemochromatosis catch coronavirus, are they at increased risk of complications? This strain of coronavirus (known as COVID-19) is a novel virus. It has emerged in recent months and so its interactions with people with genetic haemochromatosis have not been specifically studied. However, the World Health Organisation is monitoring the progression of the virus. Their monitoring of the virus’ effects in the general population, help us to develop our understanding of the risks to people with pre-existing medical conditions, such as genetic haemochromatosis, and those over the age of 50. Following an analysis of 56,000 cases of coronavirus infection in the general population, the WHO have discovered that overall : 80% of people with the virus develop mild symptoms 14% of people with the virus develop severe symptoms, including breathlessness or difficulty breathing 6% of people with the virus become critically ill However, the risks to people vary by age. The older you are, the more risky coronavirus is to your health : People over 50 years old are at higher risk of developing complications following infection by the virus. That risk increases significantly for people in their 60s, 70s and 80s. Similarly, people with pre-existing health conditions (eg diabetes, heart conditions) are at increased health risks following a coronavirus infection. I have genetic haemochromatosis, is that an "serious underlying health condition"? No. Genetic haemochromatosis is not a serious underlying health condition. Many people with GH live full and well lives, without any serious underlying health issues. You will already know if you have an serious underlying health condition, as you will have been told by your consultant or GP. Serious underlying health conditions include : if you have chronic, long-term respiratory disease (including COPD, asthma or bronchitis) if you have diabetes if you have chronic heart disease if you have chronic kidney or liver disease if you have chronic neurological conditions including Parkinson's, MS, motor neurone disease if you have a weakened immune system (eg if you have been undergoing chemotherapy) other long-term conditions where you have been advised previously to have an annual flu jab on medical grounds On 24th March, the UK government clarified what they mean by "extremely vulnerable people". People falling into this extremely vulnerable group include: Solid organ transplant recipients. People with specific cancers: people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment people having immunotherapy or other continuing antibody treatments for cancer people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell). People on immunosuppression therapies sufficient to significantly increase risk of infection. Women who are pregnant with significant heart disease, congenital or acquired. We recommend reading the government's advice in full, if you feel that you are "extremely vulnerable". I am pregnant, what is the latest advice regarding coronavirus? The Royal College of Obstetricians & Gynaecologists say that the evidence we have so far is that pregnant women are still no more likely to contract the infection than the general population. We have summarised their latest advice here (updated Saturday 21st March) . The RCOG has published guidance (Friday 27th March) for NHS and other key workers who may be concerned about working during the Covid-19 outbreak, whilst pregnant. They conclude : "Currently, there is no evidence to suggest that coronavirus causes problems with the baby’s development or causes miscarriage. There is also no evidence that coronavirus can be passed from mother to baby in utero (vertical transmission) and no previous coronavirus has been shown to cause fetal abnormalities." I have an appointment to attend hospital for a scan or venesection, should I go? Yes, unless you have symptoms of coronavirus or you have been told to self-isolate or you have been specifically instructed by the NHS not to attend. From Tuesday 24th March, people are still allowed to travel to attend hospital or other medical appointments. I’ve been unable to attend venesection as usual, will that be a problem? There may be various reasons why you are unable to attend a venesection. These could include your own ill-health with coronavirus, self-isolation resulting from a close relative’s infection or specific UK government or NHS advice. If you have coronavirus or are self-isolating, venesection is not a priority. Delaying a venesection by a few weeks or months will generally not have any lasting implications for your health. The priority will be to recover from the coronavirus and/or prevent infecting others. If you have the symptoms of coronavirus or have been told to self-isolate, you should not attend your GP, pharmacy, hospital or blood donation centres. This will help to reduce the risks of infecting others, including our hard-working NHS medical teams. My venesections have been cancelled for <<months>>, can I be a blood donor? Yes - most people can be donors, but not everyone. Increasingly, NHS hospitals are cancelling or postponing venesections. This varies around the country; some hospitals are continuing to venesect people pre-maintenance, others have suspended all services. The hospitals are doing this to free-up resources for the projected increase in workload associated with Covid-19. Some specialist units (eg haematology-oncology) feel that it is safer for their immune-compromised oncology patients, to not have venesections done on the unit for the time being as it is a potential infection risk. So what can we do? If you are well and have not had coronavirus and have not had contact with anyone who has has coronavirus AND you are in maintenance, you can donate blood via the NHS Blood & Transplant service, subject to their normal donor eligibility criteria. From Tuesday 24th March, people are still allowed to travel to attend hospital or other medical appointments, including travel to a blood donation centre to donate blood. The NHS Blood Service has seen a 15% decrease in donations from the general population, due to the coronavirus outbreak. If you have genetic haemochromatosis, are in maintenance and are in good health please consider donating. The NHS Blood Service have explained how to go about donating during the coronavirus outbreak, here. How can I take care of my mental health, whilst self-isolating or staying at home? Mental health is just as important as physical health. We have gathered together a collection of helpful resources here. I have GH and need to home-school my kids, where do I start? Our Membership Administrator, Vicki, was a primary school teacher before she joined our team. She's gathered together a range of resources for parents and guardians who are home-schooling children due to the coronavirus outbreak. I have received a UK government/NHS letter saying I am extremely vulnerable and must self-isolate for 12 weeks, why? The NHS started informing 1.5 million people from Monday 23rd March that they were at particular risk from coronavirus, due to a serious underlying health condition(s). This included people with compromised immune system as a result of recent chemotherapy, people with certain types of cancer and other serious illnesses. Note that having genetic haemochromatosis itself is NOT a serious underlying health condition, but GH may cause other illnesses (such as diabetes or liver cancer) which ARE serious underlying health conditions. Follow the NHS advice and self-isolate for 12 weeks. If you need help with day-to-day living (eg grocery shopping), register here for free assistance. I am waiting for a liver transplant, what is the current advice for me? On Wednesday 25th March, NHSBT wrote to us outlining some temporary changes to the transplant programme, which may be relevant if you are waiting for a liver transplant. The British Liver Trust guidance is worth reading, too. I have advanced liver disease, hepatitis or have already received a liver transplant, what is the current advice for me? If you have advanced liver disease (eg NASH, NAFLD) or have been undergoing treatment for hepatitis or have recently had a liver transplant, the British Liver Trust is collating and updating guidance here, which may be helpful. I have diabetes as a result of genetic haemochromatosis. Am I at "very high risk"? What should I do to keep well? According to Diabetes UK, most people with diabetes are not at very high risk from coronavirus and do not need to self-isolate for 12 weeks UNLESS the NHS have written to them personally, based on their specific circumstances, to say otherwise. There is loads of helpful advice for people with diabetes here. Where can I get further help or advice? For people living in the UK : Her Majesty's Government latest advice and updates on coronavirus in UK For people living in Northern Ireland : HSC Public Health Agency advice For people living in Wales : Public Health Wales advice For people living in Scotland : Health Protection Scotland advice WHO frequently asked questions on coronavirus UK Government - advice for travellers Families with young children UK government advice regarding school-aged children - "If it is at all possible for children to be at home, then they should be." Plus details of keyworker exemptions for ongoing schooling during the outbreak. British Psychological Society advice for families - how to talk to kids about coronavirus (thanks to our clinical advisor Roseanna Brady) A wonderful book that helps explain coronavirus to young children Our charity helplines are also available - get in touch if you'd like to chat or have a concern about coronavirus and genetic haemochromatosis. Please note that our helplines are staffed by trained volunteers, many without formal medical training and so we may be unable to help with specific health concerns. But we're always here with a listening ear!