Information for People living with Fanconi Anaemia

As COVID-19 is a new virus, there is very little known and understood yet about the implications for people living with Fanconi Anaemia. Increasing amounts of data are being collected and analysed but it will be some time before the medical and research communities have answers. Until then, we must err on the side of caution to minimise the risks to people with FA, so the view of medical trustees of Fanconi Hope is that the safest course of action is that all people with FA should adopt the Shielding Measures recommended by the UK government.

What is known is that based on data from China, COVID-19 is mainly an adult disease, with only 2% of 44,672 confirmed cases being under 20. It is very often a mild disease and again from the Chinese data, of the 44,672 cases, 81% were mild.  The number of mild cases is itself probably an underestimation as many mild cases may never have been tested. Data from COVID-19 hospitalisations in Belgium shows that 27% had no underlying conditions and 6% had diseases of the immune system or haematological cancer such as leukaemia. At the University Hospital of Wuhan, about 0.8% of cancer patients had COVID-19, versus 0.4% from the general population.  (All information from COVID-19 and me: an EBMT webinar for patients and caregivers 3/4/20). This webinar should be available to watch within the next few days.

In a webinar by Dr Sujith Samarasinghe, a paediatric haematologist from Great Ormond Street Hospital on 24/3/20, he said that he was not hearing that children with immunodeficiency were getting serious COVID-19 symptoms. There had been no incidence of severe symptoms with leukaemia or aplastic anaemia patients in Italy and in the whole of the EU there were only 2 cases of coronavirus in leukaemia patients and none with aplastic anaemia patients.

We have been in touch with many of our European counterpart FA support organisations and as far as they are aware, no cases of COVID amongst people with FA are known in the UK, Germany, the Netherlands, Italy or Spain. There is one possible case in Denmark and one known case, an FA adult many years post-transplant, in France. In France also, doctors have observed that people with immune deficiency don’t seem to have a higher risk of developing Covid-19. However we should not read too much into this, as part of the reason may be the fact that many FA patients will have taken much greater care to protect themselves in the first place and many will have been through the self-isolation process of bone marrow transplantation previously, giving them much better appreciation of the infection protection regimes required.

Given that so much about COVID-19 is not yet understood, the view of medical trustees of Fanconi Hope is that the safest course of action is that all people with FA should adopt the Shielding Measures recommended by the UK government. Whilst not all people with FA will be at the same level of risk, there are still too many unknowns to give guidance to give people individually.

You may have received an NHS letter in the last 2 weeks saying that you are in the UK government’s extremely vulnerable category, making you eligible for additional support and giving guidance that shielding measures should be adopted. If you have FA and have not received a letter, you can register with the UK Government here and tell them whether or not you need support. You should then contact your GP to keep them informed. As the process still seems to be a little fluid, it may be that you need to contact your GP first before registering on the UK Government site.

Please note that GP or hospital clinicians looking after people in these groups have now received letters informing them of the highest clinical risk group and have been asked to review their patient lists and to add in any patients they think should be on that list, so again, if you are not on the list, please contact your GP.

It appears that some people with FA have been sent letters and some have not. Of those who have, some are many years post-transplant, some of whom are immuno-suppressed, and some who are not. Being on the Government’s ‘extremely vulnerable’ list may confer certain advantages in that you may be able to receive preferential treatment from chemists in terms of home delivery of medicines and from supermarkets in relation to online delivery slots for example. If you are on this list you should then receive a further letter from the NHS which states that the letter itself is evidence for your employer to show that you cannot work outside your home.

New UK Government guidance you should read was published on 1st April

Caring for people at highest clinical risk from COVID-19 Background and FAQs for patients

Read about what Shielding entails here.[/vc_column_text][vc_separator sep_color=”color-jevc”][vc_column_text]Please note:

  • If, at any point, you think you have developed symptoms of coronavirus, such as a new, continuous cough and/or high temperature (above 37.8oC), seek clinical advice using the NHS 111 online coronavirus service (If you do not have access to the internet, call NHS 111. Do this as soon as you get the symptoms.
  •  Most routine appointments are being cancelled, so if you need urgent medical attention you should contact your care team.

Mental Health and Wellbeing

 

It is important to ensure the mental health and wellbeing of everyone who is self-isolating for 3 months or more. Here are some useful Mental Health and Wellbeing websites

Educational Resources

 

Here are some predominantly free Online Educational Resources but parents should check these sites for suitability first.

Further  Useful Information

 

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