We have set out below guidance and links to resources regarding COVID 19. We recommend that you speak to your hospital consultant for medical advice relevant to you (as everyone is different).
PNH National Service Guidance
PNH National Service’s website (last updated on 22/09/21)
Most Recent Government Guidance
The most recent Government guidance (01/04/22) for those defined as “clinically extremely vulnerable” is here.
COVID 19 Vaccination Effectiveness for PNH Patients
On 6 December 2021, the Aplastic Anaemia Trust hosted a webinar where Professor Peter Hillmen and Alexandra Pike from the Leeds research discuss the results of research about whether the COVID 19 vaccine is effective for PNH and Aplastic Anaemia patients.
The study found that after one dose of the Covid-19 vaccine, people with AA and/or PNH were less likely to mount an immune response than healthy volunteers. However, after a second dose of the vaccine, there was a large increase in the number of people who had an immune response to the vaccine which is great news for our community. The Lancet published a piece about this research on 30 June 2022 which can be read here.
PNH National Service
The PNH National Service has provided guidance (12/04/22) about PNH and Aplastic Anaemia patients receiving the COVID 19 vaccination.
Cold Season Advice
The Aplastic Anaemia Trust (AAT) has a helpful Cold Season Advice webpage, which includes a webinar recording with Dr Austin Kulasekararaj from Kings on 30 September 2021.
Looking after your mental health is also very important. Listed below are some sources of more information and support:
This page has useful tips about coping with anxiety about getting ‘back to normal’
Give us a Shout – TEXT 85258 24/7 for mental health support
MIND – mental health charity
The Aplastic Anaemia Trust has published a list of resources recommended by the Department of Haematology at
King’s College Hospital, London
Travel Insurance Information
Information about making travel insurance claims as a result of COVID 19 can be found here
Other External Guidance
Please see here for guidance on PNH and Aplastic Anaemia and COVID 19 from the European Society for Blood and Marrow transplantation.
Research on COVID 19 and PNH
Scientific papers published on PNH and COVID 19:
- “Terminal complement inhibition dampens the inflammation during COVID 19″ (June 2020) – this study reviewed four PNH patients who contracted COVID 19 (two on treatment and two who were not) and how they were affected
- COVID‐19 infection in patients on anti‐complement therapy: The Leeds National Paroxysmal Nocturnal Haemoglobinuria service experience – September 2020
- COVID-19 Infection in Patients with Paroxysmal Nocturnal Hemoglobinuria in Italy – November 2020
- COVID 19 Infection in A patient undergoing Treatment for Paroxysmal Nocturnal Hemoglobinuria (PNH) with Ravulizumab (May 2021)
- Internet based patient survey on the consequences of COVID-19 lockdown on treatment and medical follow-up of patients with aplastic anemia or paroxysmal nocturnal hemoglobinuria in Germany – January 2021