Overview

SOSMD is an international resource aimed at providing parents and carers of DMD with information they need to deal with emergency situations.

Every person with DMD will eventually face a life threatening medical emergency. Whether they survive depends entirely on timely and well executed intervention. Those around them, their primary carers, are the persons best placed to do this. For you, this means being prepared and knowing what needs to happen next is absolutely critical.

This website and the resources we provide fill a fatal gap in the information available: That there are simply no well defined emergency protocols for parents and carers. There are plenty of superficial "safe" information sources that give great every day advice right up to the point when you REALLY need to know what to do, and then there is nothing. No information at all. Nothing detailing exactly how to respond to emergency situations, how to be prepared for them, how to identify them, how to prevent them, how to provide life support, and what standards to expect from medical professionals. Moreover, how to recognise when medical professionals are about to apply inappropriate protocols.

This website covers situations that are most relevant to Duchenne Muscular Dystrophy and ones where DMD specific protocols are essential and your son's life depends on it. It is not an exhaustive resource on all possible types of medical emergency.

What you will find here

On this website you will find detailed outlines of relevant medical emergencies, including:

• An overview of the condition
• Who is at risk
• What the warning signs are
• Carer's Emergency Protocol
• Clinical Management & Treatment
• Any "Early Discharge" Warning and Safe Discharge Checklist

You will also find:

• Techniques
• Preventative Measures

Types of Emergency

Respiratory

Cardiac

Skeletal

Digestive

Muscular/Endocrine

It won't be alright on the night

This is a cautionary tale...

Do not assume that in an emergency, you will get to hospital in time or that paramedics will arrive in time. While emergency reponse times in the UK for category 1 cases (life threatening) is 7 minutes 40 seconds, this is not met, and 10% of cases wait over 15 minutes (NHS England). A similar pattern exists for other countries. This is an enormous time to wait when it takes just five minutes to die from respiratory failure.

Do not assume that the doctors and paramedics will know exactly what to do. Duchenne Muscular Dystrophy is a rare disease affecting approximately 1 in 3,500–5,000 male births worldwide, and the number of adults with DMD is even smaller. This means that the average physician will encounter DMD once in their entire career — and that one encounter may be your child.

A 2021 UK audit (NCEPOD and British Thoracic Society Home Ventilation Audit) found that over 60% of emergency departments had no DMD-specific protocols for respiratory arrest, assisted coughing, or non‑invasive ventilation. In the United States, emergency medicine training surveys published in Chest, Respiratory Care, and the American Journal of Emergency Medicine report that fewer than 1 in 10 emergency clinicians had ever managed a DMD respiratory crisis. Most had never been trained in assisted cough techniques, mucus‑plugging management, or the risks of oxygen‑only therapy in neuromuscular disease.

Cardiac care shows the same pattern. Despite clear international guidelines, routine cardiac surveillance is missed in up to 40% of patients outside specialist centres. (UK cardiac surveillance audits - Royal Brompton, Great Ormond Street, Newcastle). Many clinicians still believe DMD is “a childhood condition”, unaware that modern care has extended life expectancy into adulthood — and that adult emergencies are now common.

Most importantly, emergency responders and paramedics simply will not know that generic life‑support and resuscitation scripts are inappropriate for neuromuscular patients. These scripts and protocols are designed around the physiology of able‑bodied people — normal muscle strength, normal bone strength, normal breathing mechanics, normal cough force, and normal oxygen handling. None of these assumptions apply in Duchenne.

Generic life‑support scripts assume that breathing failure is secondary to cardiac arrest. In Duchenne, the opposite is usually true: respiratory failure comes first, and the cardiac arrest is simply the final step in that cascade. Yet standard protocols instruct responders to follow a cardiac‑first pathway, meaning the underlying respiratory crisis — especially mucus obstruction — is ignored at the moment it matters most. The immediate instinct is to lay a patient flat and start CPR, when they should be sat upright and ventilated. Mucus is pumped into upper airways resulting in irrecoverable airway obstruction. This is not a rare mistake: emergency systems default to generic protocols, and unless families intervene, responders may follow a pathway that does not match the underlying cause of collapse in DMD and ultimately contibute to a fatal outcome.

In short: you are the expert in the room and for the next 15 minutes you may well be the only person in the room. You know your child, their baseline, their equipment, their risks, and their history. In an emergency, you will need to give him the best chance of survical, and you may need to advocate forcefully. Doctors do not like to be corrected, and they may not recognise the urgency of a DMD respiratory collapse until it is too late.

That is why SOSMD is working to provide printable emergency cards, checklists, and protocol summaries that you can hand directly to clinicians. These resources ensure that even if the doctor has never seen DMD before — and statistically, they haven’t — they will have the correct information in their hands at the moment it matters most.