With the growing concerns regarding COVID-19 (“coronavirus”) across Canadian communities and the world, our hearts go out to all those who’ve been impacted. We also want to show our profound gratitude to the health care professionals and everyone on the front lines of this pandemic. Jesse’s Journey is here to support the Duchenne community during this uncertain time and will continue to provide accurate and timely information on how to keep you and your family safe.
On Thursday, April 2, 2020, Jesses’ Journey hosted a webinar for Duchenne families to address their questions regarding Duchenne and COVID-19 in Canada. The video recording includes closed captioning on YouTube, which you can also translate into any language as needed. Please see the key highlights below:
Le jeudi 2 avril 2020, Jesses’s Journey a organisé un webinaire pour les familles vivant avec la dystrophie musculaire de Duchenne (DMD) pour répondre à leurs questions concernant la DMD et le virus de la COVID-19 au Canada. L’enregistrement vidéo sur YouTube comprend des sous-titres que vous pouvez également traduire dans n’importe quelle langue au besoin. Voici les points saillants du webinaire en français et en anglais ci-dessous :
- Do not stop or change any of your medications unless advised by your physician.
- Individuals with respiratory disease, underlying medical conditions like Duchenne, or have a weakened immune system due to steroid use, are at higher risk of more severe illness with COVID-19. Still, there is no published data currently available.
- Prevention is vital. Stay home and practice close contact with your immediate family only. If you go out for a walk practice social distancing, wash your hands often with soap and water for 20 seconds, and clean common spaces and surfaces daily.
- Review your stress dosing protocol, so you are prepared for any illness and contact your physician if you have any questions.
- Do not go to ER if not necessary; if you have an emergency that does not require an ambulance, contact your neuromuscular clinic or one of your subspecialists first to find out if you have access to an ER diversion clinic.
- If you or your child has a severe respiratory illness, bring your equipment with you in case there are shortages at the hospital. This includes your cough assist device or ventilators, as you may need to adjust your settings. For more information on home care for ventilated patients, please refer to the recommendations here.
- Follow your clinic recommendations on the pneumonia vaccination and the appropriate time to receive it if you have not already been vaccinated.
- At this time, we are not aware of any drug shortages; however, check your medications and make sure you have what you need. Try not to leave repeats to the last minute. Contact your clinic if you have any questions regarding your medications.
- If you have symptoms of COVID-19, contact your healthcare team right away.
- Try to continue a routine at home for sleep, school and stretching, establish firm eating habits and check your home for fall risk. Set reasonable limits on screen time.
- Try to limit your media exposure to COVID-19 and set time each day to discuss what’s going on with your family, remember your anxiety will be a model for your child and look for resources in your community if you need help coping.
- By this time, you should have heard from your medical teams regarding upcoming appointments or clinical trial visits. If you have not, please contact them directly for guidance on what to do for your next visit.
- Clinics are using additional means like telephone, telehealth visits as alternatives. Ask your clinic and medical teams what options are available to you.
- Think about setting a daily goal/challenge for you and your family to maintain physical activity that is appropriate for your level of function. Check online resources and workouts to find out what’s available and remember Duchenne individuals should avoid any activity that causes muscle pain.
- Don’t’ forget to check in on everyone’s coping and wellbeing (including yourself). Discuss and look for solutions to make the most of this time.
- Check your public health website for most up to date information regarding guidelines/advice locally as well as instruction on quarantine, info on proper hygiene practices and social distancing. Jesse’s Journey has also provided relevant links to additional resources below.
- N’arrêtez ou ne modifiez aucun de vos médicaments à moins d’avis contraire de votre médecin.
- Les personnes atteintes d’une maladie respiratoire, d’une condition médicale comme la DMD ou dont le système immunitaire est affaibli en raison de l’utilisation de stéroïdes, sont plus à risque de développer des complications plus graves avec le virus de la COVID-19. Jusqu’à maintenant, aucune donnée publiée n’est actuellement disponible.
- La prévention est vitale. Restez à la maison et ayez des contacts étroits avec votre famille immédiate uniquement. Si vous sortez pour une marche, pratiquez la distanciation sociale, lavez-vous souvent les mains avec de l’eau et du savon pendant 20 secondes, et nettoyez quotidiennement les surfaces et les espaces communs.
- Ayez en main vos prescriptions de corticostéroïdes afin de vous préparer à toute maladie et contactez votre médecin si vous avez des questions.
- N’allez pas aux urgences si ce n’est pas nécessaire ; si vous avez une urgence qui ne nécessite pas d’ambulance, communiquez d’abord avec votre clinique en maladies neuromusculaires ou l’un de vos spécialistes pour savoir où vous diriger exactement.
- Si vous ou votre enfant souffrez d’une maladie respiratoire grave, apportez votre équipement avec vous en cas de pénurie à l’hôpital. Cela inclut votre dispositif d’aide à la toux ou vos appareils de ventilation, car vous devrez peut-être ajuster vos paramètres. Pour plus d’informations sur les soins à domicile pour les patients ventilés, veuillez consulter les recommandations ici.
- Suivez les recommandations de votre clinique concernant la vaccination contre la pneumonie et le moment approprié pour la recevoir si vous n’avez pas déjà été vacciné.
- Pour le moment, nous n’avons connaissance d’aucune pénurie de médicaments ; cependant, vérifiez vos médicaments et assurez-vous d’avoir ce dont vous avez besoin. Essayez de ne pas renouveler vos prescriptions à la dernière minute. Contactez votre clinique si vous avez des questions concernant vos médicaments.
- Si vous présentez des symptômes de la COVID-19, contactez immédiatement votre équipe soignante.
- À la maison, essayez de garder une routine pour le sommeil, l’école et les étirements, établissez des habitudes alimentaires fermes et vérifiez votre maison pour le risque de chute. Fixez des limites raisonnables sur le temps d’écran.
- Essayez de limiter votre exposition médiatique à la COVID-19 et fixez un temps chaque jour pour discuter de ce qui se passe avec votre famille. Souvenez-vous que votre niveau d’anxiété influencera celui de votre enfant et recherchez les ressources dans votre communauté si vous avez besoin d’aide pour y faire face.
- À ce moment-là, vous devriez avoir entendu vos équipes médicales concernant les rendez-vous à venir ou les visites d’essais cliniques. Si ce n’est pas le cas, veuillez les contacter directement pour savoir comment faire pour votre prochaine visite.
- Les cliniques utilisent des moyens supplémentaires alternatifs comme le téléphone et les visites virtuelles. Demandez à votre clinique et à vos équipes médicales quelles options s’offrent à vous.
- Pensez à fixer un objectif/défi quotidien pour vous et votre famille afin de maintenir une activité physique adaptée à votre niveau. Consultez les ressources en ligne et les séances d’entraînement pour savoir ce qui est disponible et rappelez-vous que les personnes atteintes de DMD devraient éviter toute activité qui provoque des douleurs musculaires.
- N’oubliez pas de vérifier l’adaptation et le bien-être de chacun (y compris vous-même). Discutez et recherchez des solutions pour profiter au maximum de ce temps.
- Consultez votre site Web de santé publique pour obtenir les informations les plus récentes concernant les directives/conseils au niveau local ainsi que des instructions sur la quarantaine, des informations sur les bonnes pratiques d’hygiène et la distanciation sociale. Jesse’s Journey a également fourni des liens pertinents vers des ressources supplémentaires ci-dessous.
If you have questions not addressed here or other topics you would like to hear more about please let us know by sending an email to firstname.lastname@example.org. Remember, Duchenne families are best equipped for this situation as we have already adapted our lifestyle to accommodate Duchenne. However, these are still trying times for everyone, so please don’t forget to ask for help if you need it and stay connected. We are here for you.
Si vous avez plus de questions, veuillez-nous envoyer un e-mail à email@example.com. N’oubliez pas que les familles DMD sont les mieux équipées pour cette situation, car nous avons déjà adapté notre mode de vie pour accueillir la dystrophie musculaire de Duchenne. Cependant, ce sont des moments difficiles pour tout le monde, alors n’oubliez pas de demander de l’aide si vous en avez besoin et de rester connecté. Nous sommes là pour vous.
General COVID-19 Resources
See an up-to-date timeline from the World Duchenne Organizaton (WDO) on all advancements related to COVID-19 and Duchenne:
What information or advice would you find helpful during this time?
Neuromuscular Network for Canada (NMD4C): Click here to see their FAQ
Muscular Dystrophy Canada (MDC): Click here to see their FAQ
Parent Project Muscular Dystrophy (PPMD) in the USA: Click here to see their FAQ
Care recommendations for home-based ventilation during COVID-19:
The network of pulmonary and lung health experts at the Chest Foundation, along with the Home Mechanical Ventilation and Neuromuscular Disease NetWork, have provided recommendations and guidelines to help keep you and your loved ones stay as healthy as possible – please see here.
Want to know more about COVID-19 and how it may impact Duchenne clinical trials?
While we wait on specific information for Canada, see updates from the Parent Project Muscular Dystrophy (PPMD) here.
The World Duchenne Organization hosted a webinar on Saturday, June 20, 2020, asking: How do you return (or not) to the Standards of Care for someone affected by Duchenne or Becker muscular dystrophy, now that most countries are opening up again? What preventive measures can we take when visiting a hospital, or our schools? Prof. Muntoni, Prof. Goemans, Dr. Wong and Dr. Cripe provide their expert opinion on care for DMD/BMD in times of COVID-19.
The COVID-19 pandemic has contributed to loss of a daily routine and disrupted healthy eating. For some children and adults with neuromuscular conditions, healthy eating and nutrition is important due to reduced ability to walk around (so less energy is burned off), or an increase in appetite (which may be a side effect of some medications e.g. steroids). Nutrition is an important aspect of the long-term management of neuromuscular disorders.
In this webinar, you will learn the:
(1) Best evidence to support healthy eating and nutrition for people affected by neuromuscular disorders.
(2) Best evidence to support use of supplements for people affected by neuromuscular disorders.
(3) Importance and ways to manage weight during COVID-19 pandemic.
(4) Practical strategies for eating well and keeping immune system strong during COVID-19 pandemic.
Presenters: MARK TARNOPOLSKY, MD, PhD, FRCP(C) – McMaster University (Ontario) LORRY CHEN, RD – Holland Bloorview Kids Rehabilitation Hospital (Ontario) LESLIE KRONGOLD, Ed.D. – Glass Half Full (USA)
The fourth webinar in the MDC #LetsTalkNMD series is “COVID-19, NMDS & Respiratory Health”. This webinar focused on questions about COVID-19 and lung health. It highlighted the impact of COVID-19 on those with respiratory insufficiency from neuromuscular weakness or musculoskeletal limitations and provided information on special considerations for people with NMDs who may require respiratory support. There’s also information on how to develop an emergency care plan and actions you can take to protect your lung health during this time.
The third webinar in the MDC #LetsTalkNMD series is “Virtual/Tele-Physiotherapy During COVID-19“. This webinar focused on providing an overview of the evidence for virtual/tele physiotherapy rehabilitation. It covered special considerations in using virtual/tele physiotherapy with individuals living with neuromuscular disorders. Speakers provided examples from their own clinical practice to help you best implement virtual/tele-physiotherapy in your home. It also highlighted the challenges and opportunities of virtual/tele-physiotherapy during this COVID-19 pandemic.
The Canadian Organization for Rare Disorders (CORD) hosted a webinar on Friday, April 24, 2020, to discuss their results from a recent survey and their position on the response to COVID-19.
The second Webinar in the MDC #LetsTalkNMD series is “COVID-19: Coping with Stress & Anxiety”. This webinar focused on the impact of the COVID-19 pandemic on mental health and wellness. As the situation evolves week by week and as we adjust to a new “normal”, stress and anxiety related to the current COVID-19 pandemic will continue to evolve. Top five takeaways from the webinar:
#1. New Normal: Our “new normal” (life with COVID-related stressors) includes multiple different stressors or threats: social isolation, financial challenges, work/life balance, health scares and information overload. When we have such ongoing and chronic stressors, even when they are not all “life-threatening,” we are at risk for responding on ‘overdrive.’ Symptoms of ‘overdrive’ fall into 4 categories: cognitive (i.e., constant worrying), emotional (e.g., anxiety, irritability, depression), physical (e.g. fatigued easily and low energy) and behavioral (e.g., changes in sleep and eating patterns).
#2. Grounding: Grounding is a technique that helps us re-orient to the here and now, bringing us into the present. This is a very easy-to-use sensory awareness technique if you-re feeling overwhelmed or anxious. You can engage any of your senses to help ground yourself in the present moment. For example, sit with your pet (if you have one) and focus on the feeling of their fur on your hands as you pet them. Or, take a walk or find a comfortable spot to sit outside in nature. Breathe deeply and focus on what you smell. Or go up close to a tree or flower and see what that smells like.
#3. Reframe Thoughts: Amend negative thoughts. Catch the initial thought: I’m not going to be able to cope during this crisis. Check the thought by looking at the facts: There are real health concerns. I’ve managed with other difficulties in the past (e.g. family illness, job changes). There are supports in place from our community and government to help me get through it. Change and reframe the initial thought based on the facts: While there are real concerns and this is a challenging time, I have coped with difficulties before and there are supports and strategies I can use to stay healthy, like physical distancing.
#4. HALT: H.A.L.T. (Hungry, Angry, Lonely and Tired): Each one of these four physical or emotional conditions, if not taken care of, leaves an individual vulnerable for self-destructive behaviors and stress.
#5. Grief: Because of COVID-19, we’re feeling and experiencing grief in different ways. We feel the world has changed, and it has. We realize things will be different. The loss of normalcy; the fear of economic toll; the loss of connection; the loss of humans.
The first webinar in the #LetsTalkNMD series focused on providing family members and formal caregivers with precautions and strategies for supporting and providing care to individuals with neuromuscular disorders. It also highlighted the challenges and opportunities of caregiving during the COVID-19 pandemic.
The stress brought on by self-isolation and social distancing during a pandemic can be challenging to manage, especially when so many people who have experienced job changes or job loss, disruptions in childcare and schooling, and temporarily limited in-person access to support networks. Presenters discussed the topics of depression and anxiety during a pandemic – in both us and our children – and how to cope and find hope.
Speakers: Dr. Natalie P. Truba, PhD, Nationwide Children’s Hospital Dr. Molly Colvin, PhD, Massachusetts General Hospital
The World Duchenne Organization (WDO) hosted its fourth webinar regarding Duchenne and COVID-19. In this edition, Clinical Neuropsychologists, Dr. Jos Hendriksen and Dr. Molly Colvin share their knowledge about stress, anxieties and worries, and what you can do to take care of yourself and your child.
Jesse’s Journey hosted a webinar, COVID-19 & Duchene: FAQ, on Thursday, April 2, 2020, to help answer questions from the Canadian Duchenne community. Thank you to the six healthcare partners and Duchenne experts for sharing their guidance on how you can continue to keep your family safe: Dr. Craig Campbell, Pediatric Neurologist and Director of the Neuromuscular Clinic Children’s Hospital London Health Sciences (London, Ontario); Dr. Jean Mah, Pediatric Neurologist and Director of the Neuromuscular Program, Alberta Children’s Hospital (Calgary, Alberta); Dr. Jordan Sheriko, Pediatric Physiatrist and Medical Director of Pediatric Rehabilitation, IWK Health Centre (Halifax, Nova Scotia); Dr. Erin O’Ferrall, Adult Neurologist, Montreal Neurological Hospital (Montreal, Quebec); Dr. Refika Ersu, Pediatric Respirologist, Children’s Hospital of Eastern Ontario (Ottawa, Ontario); and Dr. Karina Top, Infectious Disease Specialist at IWK Health Centre (Halifax, Nova Scotia).
On April 1, 2020 PPMD hosted an interactive webinar focusing on the adult Duchenne population and their unique risks for COVID-19, featuring representation from across their network of Certified Duchenne Care Centers to discuss adult neuromuscular, cardiac, and pulmonary concerns and answer questions.
The World Duchenne Organization hosted its third webinar regarding Duchenne and COVID-19. Patient organizations came together to explain the current situation in their countries and challenges due to the coronavirus outbreak. Prof. Dr. Jan Verschuuren, LUMC the Netherlands, explained how families, clinicians and hospitals can prepare for potential Duchenne patients with a COVID-19 infection.
The second webinar hosted by PPMD took place on Thursday, March 26, 2020, called “COVID-19 & Medications in Duchenne: What is Safe?” Experts from PPMD’s Certified Duchenne Care Center network discussed cardiac medications, steroids, and over-the-counter medications to manage respiratory illness symptoms.
The second webinar hosted by the WDO took place on Saturday, March 21, 2020, addressing frequently asked questions about COVID-19 in relation to Duchenne and Becker muscular dystrophy. This time, Dr. Jarod Wong and Prof. Dr. Annamaria de Luca provided their opinion on the use of steroids, and possible treatments. Please see the webinar below along with the full script and notes here.
The first webinar hosted by PPMD took place on Thursday, March 19, 2020, hosted by PPMD along with Dr. Jeff Auletta (Nationwide Children’s), Dr. Seth Perlman (Seattle Children’s), Dr. Kathryn Wagner (Kennedy Krieger Institute), and Dr. Richard Shell (Nationwide Children’s).
The first webinar hosted by the WDO took place on Saturday, March 16, 2020, hosted by Elizabeth Vroom (WDO, Chair) and Suzie-Ann Bakker (WDO, Communications Coordinator) along with clinicians Prof. Dr. Eugenio Mercuri, Prof. Dr. Francesco Muntoni, Prof. Dr. Jonathan Finder, and Prof. Dr. Nathalie Goemans.
Owen, 13-years old living with Duchenne muscular dystrophy and his sister, Emma, from Toronto, Ontario are enjoying drawing and baking while #Home4Duchenne.
Show your solidarity with the Duchenne community across Canada and the world by:
1. Taking a picture of what you’re doing at home
2. Share on social media and tag Jesse’s Journey: Twitter and Instagram – @jesses_journey / Facebook – @defeat_duchenne
3. Use the hashtag #Home4Duchenne
Looking for something fun for the kids?
Download and print our #Home4Duchenne colouring page (and don’t forget to take a picture of your completed masterpiece and share it with us!).
Jesse’s Journey Events
As people with Duchenne are immunocompromised (if on steroids) and have heart and lung problems, this puts them at a higher risk of developing complications from COVID-19 if infected. The health and safety of the Duchenne community is our priority, and we cannot take any chances.
The Defeat Duchenne Family Forum presented by PTC Therapeutics and in partnership with La Force DMD scheduled for Saturday, May 2, 2020, in Montréal, Québec at Shriners Hospitals for Children – Canada was transformed from a one-day “in-person” program into a series of four virtual events from May 20 – 30, 2020.
Thank you for joining us as we came together with researchers, clinicians, and industry professionals to learn about the latest in Duchenne care and research. Click here for the event resources and recordings.
The Walk to Defeat Duchenne has been rescheduled to Monday, September 7, 2020 (World Duchenne Awareness Day). This means more time to grow your team and raise vital funds! While making future plans is challenging, the fight to end the most common fatal disease diagnosed in childhood, Duchenne muscular dystrophy, does not stop. We hope you will refocus your efforts online – by registering for the Walk, encouraging your supporters to donate, and sharing your participation on social media. Let’s see how many Virtual Walks we can create across the country because, step by step, we can make a difference.
Your Donation Matters
COVID-19 is having a significant impact on every aspect of our lives, and your donation is as important as ever. Please continue to support the life-changing research needed to defeat Duchenne, educational programs for families, and necessary advocacy efforts towards accessible and affordable treatments in Canada.
We’re Here For You
To minimize the spread of the virus, the Jesse’s Journey office is closed, but our dedicated team is working from home to help you every step of the way.
Please do not hesitate to contact us:
- Perry Esler, Executive Director: firstname.lastname@example.org
- Nicola Worsfold, Director of Research and Advocacy: email@example.com
- Rick Moss, Director of Strategic Partnerships: firstname.lastname@example.org
- Rochelle ten Haaf, Manager of Marketing and Stakeholder Engagement: email@example.com
- Matt Gennaro, Coordinator of Administration and Community Engagement: firstname.lastname@example.org
Let’s take care of each other and stay connected.