What you need to know about COVID-19
COVID-19, is a coronavirus, that is known to cause respiratory infections in individuals who contract the virus. Symptoms include dry cough, fever, tiredness and difficulty breathing, and may take up to 14 days to appear after exposure. Since people with neuromuscular disorders already experience respiratory challenges, it is understandable that you would have concerns and questions about COVID-19.
The information below was compiled by the Neuromuscular Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC), and is provided to the best of our current knowledge. Recommendations may change as the situation evolves. For tailored advice and treatment, you need to reach out to your health care provider.
COVID-19 is an infectious disease in humans caused by a novel coronavirus, similar to other strains of coronavirus that caused the 2012 outbreak of Middle East Respiratory Syndrome (MERS) and the 2002 outbreak of Severe Acute Respiratory Syndrome (SARS). COVID-19 is highly infectious for children and adults as nobody has immunity to the new virus, leading to the rapid spread between people across the globe.
The most common symptoms of COVID-19 are fever, fatigue, and dry cough. Infected people may also experience aches and pains, nasal congestion, runny nose, sore throat, and diarrhea. Symptoms are usually mild and begin gradually, and about 80% of infected people recover without treatment. However, one in six people with COVID-19 require hospitalization or intensive care due to developing more serious symptoms such as difficulty breathing, pneumonia, or organ failure. Sadly, about 1% of people who contract COVID-19 do not survive, though this risk varies depending on additional factors such as age and health care.
There is not yet a vaccine or any specific treatment for COVID-19. At this time, the best way to prevent infection is to avoid exposure. COVID-19 spreads when an infected person coughs, sneezes, or talks, expelling tiny droplets that someone else inhales or that land on a surface that someone else touches.
To avoid person-to-person infection, it is important to self-isolate (i.e., stay in your home) as much as possible. When you must go out, maintain social distancing of at least 2 meters (approximately 2 arm lengths). This distance makes it so that any expelled droplets cannot reach another person. Many people are contagious for weeks before feeling symptoms, so it is crucial to self-isolate and practice social distancing even if you feel well.
To avoid infection from exposed surfaces, frequently and thoroughly wash your hands and disinfect surfaces. Wash your hands for at least 20 seconds with soap and water. If soap and water is not available, use alcohol-based hand sanitizer with at least 60% alcohol. Do not touch your nose, eyes, or mouth, as this can transmit infection from surfaces you have touched into your body. Wipe surfaces with soap and water first, then with household disinfecting spray or wipes. If these are not available, you can dilute 2 teaspoons of bleach into 4 cups of water to use as surface disinfectant. Pay extra attention to high-touch surfaces such as doorknobs, counters, remote controls, etc.
Cough or sneeze into the bend of your elbow or into a tissue, and then throw out the tissue and wash or sanitize your hands. Facemasks are strongly recommended to be worn by people who are sick, health care providers, and caregivers. Facemasks primarily prevent passing the virus on to vulnerable people.
COVID-19 in the neuromuscular disease community
There is not yet any specific scientific evidence regarding the risk factors for neuromuscular patients if they were to contract COVID-19. However, as COVID-19 can cause difficulty breathing, neuromuscular patients are likely a higher risk group because they may already have weakened respiratory or cardiac muscles.
Generally, people infected with COVID-19 are more at risk of developing complications if they are older, have weakened immune systems, or have underlying chronic medical problems (e.g., heart disease). Neuromuscular patients may also be especially at risk if they:
- Take oral steroids or other immunosuppressants
- Have respiratory complications (e.g., ventilated, Forced Vital Capacity less than 60%, congenital myasthenic syndrome, myasthenia gravis)
- Have cardiac complications
- Have difficulty swallowing (e.g., myotonic dystrophy, oculopharyngeal muscular dystrophy)
- Are at risk of decompensation during infection (e.g., mitochondrial disease)
- Are usually advised to receive the annual influenza vaccine
Despite the lack of specific information regarding NMD and COVID-19, the following is recommended:
- The regular precautions that apply to everyone (e.g., social distancing, handwashing, disinfecting surfaces) are especially important for people with NMD and the people with whom they live.
- Make sure you are comfortable with the emergency procedures specific to your condition and equipment in case you get sick (e.g., when and how to use your breathing devices, how to deal with adrenal suppression for people on long-term steroids).
- Make sure you have a good supply of all medication and equipment, ideally 3 months worth. This is especially important for drugs obtained through Health Canada’s Special Access program such as deflazacort. Canadian pharmacies may offer online or telephone ordering and delivery services.
- Have an alert card on hand to communicate your medical needs and symptoms in case of emergency.
- Get in touch with your neuromuscular health care provider if you have a specific question or concern (e.g., about your medication).
- Starting on page 5 in the following document is information about COVID-19 for some specific conditions (this does NOT replace discussion with your health care provider)
- Information about COVID-19 and Amyotrophic Lateral Sclerosis (ALS)
- Information about COVID-19 and Becker Muscular Dystrophy/Duchenne Muscular Dystrophy
If you are currently taking any medication for your NMD (e.g., steroids), you should continue to take them as normal unless otherwise instructed by your health care provider. Many medications for NMD compromise the immune system which does increase the risk related to viral infections. However, it can be more dangerous to suddenly stop taking prescriptions without medical counsel. The safest course of action is to contact your health care provider to discuss your specific case.
Starting on page 17 in the following document is some general information about certain medications for NMD (this does NOT replace discussion with your health care provider)
There are reports circulating online that you should not take ibuprofen or Advil if you have COVID-19, but there is no scientific evidence to back this according to Health Canada. However, you should still follow any guidelines specific to your NMD (e.g., people with Duchenne often should not take ibuprofen, regardless of the presence of a viral infection).
COVID-19 and neuromuscular disease caregivers
People who provide care for neuromuscular patients, whether professionally or not, need to be extra diligent about following the regular precautions that apply to everyone regarding COVID-19 prevention. This is both because neuromuscular patients may be at higher risk if they were to contract COVID-19, and because professional caregivers may be visiting multiple homes each day. Caregivers should also wear a facemask when in contact with neuromuscular patients, whether or not they feel sick.
Neuromuscular patients and their families should identify a backup caregiver in case their primary caregiver becomes sick. In advance, make sure the backup caregiver has all the information they need to take over care with short notice. Ideally, necessary information should be written down and easily accessible for reference. Necessary information includes:
- Contact information for your doctors, clinic, pharmacy, etc.
- Names and doses of all medications
Caregivers should stop working/caregiving immediately if they feel sick.
What to do if you feel sick
Neuromuscular patients should promptly seek medical attention if they or someone to whom they have been exposed is identified with symptoms of COVID-19. This is especially important if you normally have lower breathing capacity as COVID-19 may make your breathing even more difficult. Call your health care provider to let them know that you may have been exposed and they will provide guidance about the next steps you should take (e.g., testing, monitoring, seeking in-person medical attention).
If you experience any of the following emergency warning signs, call 911 or go to an emergency room or urgent care facility:
- Difficulty breathing or shortness of breath
- Persistent pain or pressure in your chest
- New confusion or inability to arouse
- Blue lips or face
- Anything else you find severe or concerning
If you leave your house to seek medical attention, ensure you do the following:
- Call ahead to give the health care facility advance warning about your symptoms/exposure. If you are going to the hospital, also notify your regular health care provider of the situation.
- Wear a face mask to help prevent spreading your infection to others.
- Bring your breathing equipment (labelled with your name and phone number) and know/write down your device settings. You may wish to ask when you call ahead about whether your specific equipment will be welcomed. For example, some devices such as cough assist machines can increase the spread of an infection from you to your environment.
- If you have myotonic dystrophy, bring the following document to provide the health care staff with specific information about your respiratory needs. This information may also be relevant for patients of other NMDs requiring respiratory support.
- If you are sick and advised by a medical professional to try recovering at home, stay in one specific room of the house. Other people should only enter the room when necessary and take all the proper precautions when doing so. Pets should not enter the room as we do not yet know if pets can contract COVID-19, and they may increase the spread of the infection within the house.
Impact on ongoing clinical trials
Hospitals across the country are currently prioritizing their resources to fight COVID-19 and take care of other acute, severe, and life-threatening conditions such as heart attacks and strokes. They also need to limit access to the hospital for visitors, out-patients with less severe conditions, study personnel, and trial participants. Moreover, travel to the study site may be restricted or become unsafe. If you or your child are a participant in an active clinical trial, your study doctor and/or study coordinator will likely contact you if any of the following events occur:
- If a visit to the study site is planned, whether the visit is cancelled, postponed, or changed in any other way such as being replaced by a phone call or telemedicine visit
- If any changes to your study medication are required
- If the study has been terminated
You must contact your study doctor and/or study coordinator if any of the following events occur:
- If you have questions about the study
- If you feel unwell
- If you have been diagnosed with or are suspected to have contracted COVID-19
- If your caregivers or members of your household have been diagnosed with or are suspected to have contracted COVID-19
During this COVID-19 pandemic, many people are left feeling quite stressed as they worry about health, finances, school and work deadlines, supplies, and an uncertain future. Please know it is completely normal to feel stress and negative emotions in situations like this. Some strategies for maintaining mental health at this time include:
- Stay socially connected with phone calls and video chats.
- Practice mindfulness with your favourite of the many available mindfulness mobile apps.
- Set specific time limits for scrolling social media and monitoring COVID-19 news. Stop when your time limit is over and focus on other things.
- Practice deep breathing and/or go for walks outside (while maintaining social distancing).
- Do not try to avoid or push away negative thoughts or feelings. Acknowledge them, express them, then practice gratitude and positive self-talk.