DMD Pathfinders statement regarding Coronavirus (COVID-19)

As a charity we would like to address the current situation regarding Coronavirus (COVID-19).  We who have Duchenne Muscular Dystrophy are at a high risk of complications arising from any respiratory type infection, so Coronavirus (COVID-19) is a source of concern.

The official UK government description says

A coronavirus is a type of virus. As a group, coronaviruses are common across the world. Typical symptoms of coronavirus include fever and a cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties.

Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.

As of 9am on 20 March 2020, 66,976 people have been tested in the UK, of which 62,993 were confirmed negative and 3,983 were confirmed positive.

As of 1pm, 177 patients in the UK who tested positive for coronavirus (COVID-19) have died.

The risk to the UK has been raised to high, this does not mean you need to panic but you should take precautions and follow government guidelines.

The general guidelines are as follows

Guidelines concerning COVID-19 - Do 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 straight away and wash your hands afterwards try to avoid close contact with people who are unwell Don't do not touch your eyes, nose or mouth if your hands are not clean

We would also suggest people with DMD take the following extra precautions –

  • Avoid large group events.
  • Ensure your carers, PA’s. family and friends are aware that Coronavirus (COVID-19) could be serious should you become infected.
  • Ask carers, PA’s. family and friends to stay away should they have a cough or temperature.
  • Ask carers, PA’s. family and friends to be more careful regarding general hygiene around you.  Hand washing before any personal care or feeding task is very important.

The symptoms of Coronavirus (COVID-19) are similar to many other common illnesses so it’s hard to tell if you may be infected, but if you have a  a cough, a high temperature or more shortness of breath than usual you should ring 111 for advice (or get someone to ring on your behalf).  You can also use the 111 coranavirus website https://111.nhs.uk/covid-19.

As always you can also contact your usual healthcare professionals such as your GP or consultant, but they may be very busy and take time to reply.  In an emergency situation ring 999, but please advise them if you think you have Coronavirus (COVID-19) so they can take appropriate precautions.

You should not book an appointment at your GP surgery if you think you may have Coronavirus (COVID-19).  This could cause others to catch and spread the virus.

Currently there are no specific treatments or vaccines for Coronavirus (COVID-19), you will be treated to alleviate symptoms and keep you as well as possible until the virus runs it’s course.

We have currently not heard of anyone with DMD contracting this virus and hope by following the above advice nobody will.

Our strategy for the Covid-19 coronavirus going forward will be two-fold –

1 – To continue sharing advice and practical tips on the virus and how to deal with it.

2 – Host online events, interviews, and fun activities to distract us while we face the prospect of weeks of staying at home. We’ll be setting up separate chat groups for both fun and advice.

At DMD Pathfinders we are also very concerned about some measures that are being considered in the coronavirus bill.  Please read this post and contact your local MP Coronavirus Bill could drive disabled people into crisis.

We will continue to monitor the situation, the health of anyone with DMD is extremely important to us.

You can find more information below

The Official UK Government site – Coronavirus (COVID-19): latest information and advice

NHS Official page – Coronavirus (COVID-19)

NHS Website FAQ – Common questions

Advice from the Royal Brompton & Harefield NHS Foundation Trust

NMD United have produced a remarkable resource on preparing for the coronavirus as an adult with a neuromuscular condition – COVID-19 (Novel Coronavirus) Plan and Preparation Guide for Adults Living with Neuromuscular Disabilities 

There is more information from the NHS regarding patients using NIV here – Clinical guide for the use of acute non-invasive ventilation in adult patients