Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

COVID-19 and Duchenne

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:

  1. Do not stop or change any of your medications unless advised by your physician.
  2. 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.
  3. 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.
  4. Review your stress dosing protocol, so you are prepared for any illness and contact your physician if you have any questions.
  5. 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.
  6. 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.
  7. Follow your clinic recommendations on the pneumonia vaccination and the appropriate time to receive it if you have not already been vaccinated.
  8. 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.
  9. If you have symptoms of COVID-19, contact your healthcare team right away.
  10. 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.
  11. 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.
  12. 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.
  13. Clinics are using additional means like telephone, telehealth visits as alternatives. Ask your clinic and medical teams what options are available to you.
  14. 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.
  15. 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.
  16. 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.

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 info@jessesjourney.com. 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.

General COVID-19 Resources

Please see the latest information from the World Health Organization on their website.

Please see the latest information on federal regulations and recommendations for all Canadians on the Health Canada website.

Live Feed

See an up-to-date timeline from the World Duchenne Organizaton (WDO) on all advancements related to COVID-19 and Duchenne:

FAQ’S

What information or advice would you find helpful during this time?

Email your responses to info@jessesjourney.com and we will share the responses from our Canadian healthcare partners as it relates to COVID-19 and Duchenne.

World Duchenne Organization: Click here to see the “15 Things We Know So Far”

World Muscle Society: Click here to see their FAQ 

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.

Webinars

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).

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.

#Home4Duchenne

Image

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

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 scheduled for Saturday, May 2, 2020, in Montréal, Québec at Shriners Hospitals for Children – Canada has been postponed. For more information, please click here.

The Walk to Defeat Duchenne presented by Sbenati Dentistry 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.

Register your Virtual Walk today – click here for more information.

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:

Let’s take care of each other and stay connected.

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