20th March 2020

We know there is a lot of worry and confusion in the Duchenne community about the risks of coronavirus (COVID-19) for people with Duchenne muscular dystrophy. We are in contact with the key clinicians in the UK to make sure we are sharing with you the most up to date guidance.

This is the current UK government advice for both adults and children at a higher risk of complications from coronavirus (COVID-19): https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

For those specifically affected by DMD, this includes:

1) children on oral steroids; please see further advice below about steroid treatment

2) children at respiratory risk (ventilated, respiratory function (FVC) <60%, Congenital myasthenic syndromes, advised influenza vaccine)

We wanted to address some key issues:

Neuromuscular Care Centres:

We are aware that some Neuromuscular Care Centres are moving towards telephone consultations for patients’ 6 monthly appointments. This is being done to reduce pressure on the NHS. This need not alarm families. 

Corticosteroids:

We also want to address families' specific concerns about the use of corticosteroids. We have sought advice on this from clinicians and there is no evidence that people should stop taking any prescribed medication because of Coronavirus or any other virus. It is very important that your child does not suddenly stop taking corticosteroids.

For full advice on steroid management please refer to section 6 of the family guide: http://www.treat-nmd.eu/downloads/file/standardsofcare/dmd/uk_english/UK2018FamilyDMDGuide.pdf

UK Government Advice:

The UK government's current advice is to stay at home if you have coronavirus symptoms. We will share any updated government advice as soon as it becomes available.

Stay at home if you have:

  • a high temperature – you feel hot to touch on your chest or back
  • a new, continuous cough – this means you've started coughing repeatedly

Do not go to a GP surgery, pharmacy or hospital.

You do not need to contact 111 to tell them you're staying at home.

Please follow the UK government's advice to avoid catching or spreading coronavirus:

  • wash your hands with soap and water often – do this for at least 20 seconds

  • always wash your hands when you get home or into work

  • use hand sanitiser gel if soap and water are not available

  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze

  • put used tissues in the bin immediately and wash your hands afterwards

  • avoid close contact with people who have symptoms of coronavirus

  • only travel on public transport if you need to

  • work from home, if you can

  • avoid social activities, such as going to pubs, restaurants, theatres and cinemas

  • avoid events with large groups of people

  • use phone, online services, or apps to contact your GP surgery or other NHS services

Further advice can be found on the NHS website: https://www.nhs.uk/conditions/coronavirus-covid-19/

The World Health Organization has also issued advice for the public: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

Things to consider for now:

If you are a person with Duchenne, or care for a person with Duchenne, please consider the following best practices:

DMD Hub update:

We are conscious that this is a very difficult and uncertain time for us all in the Duchenne community, and we want to reassure you that we are doing everything we can to stay on top of the situation as it develops.  

Given the extra resources that will be required from the NHS to care for patients with the COVID-19 virus, it is likely that clinical trials will be affected. 

As the DMD Hub, we are working with sites and sponsors to establish:
1. What restrictions might be put in place at each hospital?
2. How study visits could be carried out to ensure patient safety is guaranteed? 
3. How patients will receive their medication? 
4. How recruitment for upcoming and ongoing trials may be affected?   

It is hard to predict how the situation will evolve, but for now it is being dealt with on a case by case, patient by patient basis. If and when we have a clearer overall picture, we will share this information with you. 

https://dmdhub.org/hub-sites/dmd-hub-news/dmd-hub-covid-19-update/