banner image

Covid-19 virus (Coronavirus)

CORONAVIRUS UPDATED 9/2/2022

On this page we attempt to interpret the latest information and advice into guidance for people with AT and their families and carers.

More information can be found on our Frequently Asked Questions sheet

Covid 19 Vaccinations and Boosters for Adults with AT

Following an increased number of queries from adults with AT and parents, immunologists from both AT Services have offered the following advice regarding vaccinations and boosters:

The main issue for individuals with A-T and Covid 19 is that they may not be able to clear their chest with infection due to their neuromuscular problems.  In this context the majority of adults with A-T will be advised to have the ‘2+1’ dosing protocol (2 primary Covid 19 vaccines and 1 booster). Timing for each of these vaccines can be found on the NHS website (link below).

The 3+1 dosing protocol (3 primary Covid 19 vaccines and 1 booster) has been designed for people with significant immune deficiency or a blood cancer. Adults and children with A-T age 12 years and older who are on immunoglobulin therapy, or have more severe immune deficiency, will be advised to have a 3rd primary covid 19 vaccine before the booster.  They will be informed about this on an individual basis by their local health professionals

Advice for young people with A-T aged 5-17:  Chronic neurological disease is in the eligibility criteria for those who fit the vaccination criteria for 2 primary covid 19 vaccines.  So, this refers to all children with A-T.

If you have any questions about any of the above information, please contact your local health professionals and ask for individualised advice.

More information on the booster programme can be found here.

Covid 19 Vaccinations and Boosters for young people with AT

Following an increased number of queries from parents, immunologists at the Paediatric AT Service in Nottingham have offered the following advice regarding vaccinations and boosters:

‘In view of their neurological condition, children with AT aged 5-11 years are now eligible for two 10mcg doses of Pfizer-BioNTech Covid-19 vaccination.  Each vaccination should be at least 8 weeks apart. We would recommend families book an appointment when this is offered to them.

We also advise at risk children 12-15 years who have had their 1st & 2nd vaccines, to have a booster 3 months after their 2nd vaccine.  Parents will be contacted when the booster is due’.

For further details please refer the NHS Coronavirus advice pages here.

Telling the NHS about AT and Coronavirus

If you need to contact the NHS about a possible case of Coronavirus in someone with AT, you must tell them about AT. If you are not sure what to say, we have prepared a document to help you here.

If a person with AT or one of the family develops symptoms of the virus

If someone with AT (or a close family member) shows any symptoms of the virus, contact 111 as soon as possible. Explain that the person has AT and what that means (refer them to our website).

We also strongly advise that you let us know via [email protected] or by phoning 01582 760733 so that we can make sure you have the relevant information and support. If you have contact details for the Nottingham and Papworth clinics you can contact them directly.

If you have concerns about your child’s health

We have received a message from the British Association of Childhood Disability, forwarded to us by the team at Nottingham. It says that many paediatricians are concerned that children are presenting late to paediatric emergency departments due to worries about exposure to Covid-19 or not wanting to be a drain on NHS resources. There is a risk that delays may be dangerous for the child and also increase the demand for critical care.

They have asked us to underline that paediatric emergency departments are safe and functioning well. If parents have serious concerns about their child’s health they should contact their GP and not be afraid to use the paediatric emergency department when it is required.

It is particularly important where children have long term or recurrent respiratory problems and difficulties with chest clearance to make sure you know who to call in the event of a deterioration when admission to hospital might be advisable. If you have any concerns about this, please do contact us on 01582 760733.

And finally…

This page provides the latest information and advice that we have. However, we cannot cover every aspect of the condition and as we have said there is a lot that is not yet known.

So our last piece of advice is to read what you can and then use your common sense. The AT Society will be here right through the emergency to talk to, to give information and guidance and, where we can, practical support. If you do have further questions or want to talk anything though, please contact us.