by: Parent Project Muscular Dystrophy
March 23, 2020 Update:
The content below is a previous update from March 12, 2020. Please click here to view our most recent COVID-19 information & FAQs.
PREVIOUS INFORMATION FROM MARCH 12, 2020:
Update on Coronavirus Recommendations & PPMD Events
Dear Duchenne Community,
We recognize that as the coronavirus (COVID-19) pandemic continues to evolve and new cases are diagnosed in the US, concerns surrounding infection and prevention measures continue to grow as well. PPMD is in contact with the Centers for Disease Control (CDC) and monitoring for any specific recommendations pertinent to the Duchenne population. PPMD also continues to consult with physicians from many of our Certified Duchenne Care Centers to determine recommendations specific to the Duchenne population.
Current Situation
The CDC recently provided guidance for people at higher risk of developing complications from coronavirus:
- Stock up on supplies
- Maintain infection prevention measures (detailed below)
- Stay away from those who are sick, limit close contact with people, and wash your hands frequently
- Avoid crowds as much as possible
- Avoid cruise travel and other non-essential travel, especially by air
- Stay home as much as possible to reduce exposure
Higher risk populations are defined by the CDC as those who are:
- Older adults
- People with heart disease
- People with diabetes
- People with lung disease
As people with Duchenne are immunocompromised (if on steroids) and have heart and lung problems, this puts them at higher risk.
Precautions and Preparations
Infection prevention and control practices are key. As a reminder, these practices include:
- Avoid close contact with people who are sick
- Wash your hands often with soap and water for at least 20 seconds
- If soap and water are not available, use hand sanitizer with at least 60% alcohol
- Avoid touching high-touch surfaces in public places
- Avoid touching your face, nose, eyes, etc.
- Clean and disinfect your home to remove germs
- Avoid crowds and poorly ventilated spaces
- Avoid non-essential travel
If you are a person with Duchenne, or care for a person with Duchenne, please consider the following best practices:
- If you have a cough assist machine or chest therapy device, ensure it is in proper working function and use it as prescribed. If you do not routinely use it, familiarize yourself with it to ensure you know how to use it, should it become necessary. If you are sick, increase the frequency by which you use it, and speak with your pulmonologist about any other recommendations.
- If you are on daily steroids, please coordinate with your prescribing physician to ensure you have oral and injectable stress doses available at home if you develop a high fever. Do not make sudden changes to your steroid regimen.
- Make sure you have a supply of acetaminophen (Tylenol) for fever reduction.
- Ensure all prescribed medications are up to date and you have an adequate supply at home. Speak with your pharmacist about filling medications early if necessary.
- If you are concerned about attending school and are immunocompromised and/or having impaired lung function, speak with your neuromuscular team about whether staying home from school is best for you.
- Consider rescheduling non-essential medical evaluations, discussing telehealth options with your providers, and avoiding travel to hospitals to reduce the chance of exposure.
- While coronavirus is different from the flu, consider the following illness management recommendations.
- Keep in mind other emergency care considerations.
What To Do If Ill
Cases of coronavirus in children are rare, typically very mild, and do not require hospitalization. However, mildly affected children may pass coronavirus to people with whom they come into contact, like older adults and people at higher risk. To date, there are no documented cases of coronavirus in a person with Duchenne.
If you feel you or a family member shows symptoms of coronavirus — fever, cough, shortness of breath — contact your medical provider immediately. Emergency warning signs of coronavirus include difficulty breathing, persistent pain or pressure in the chest, new confusion or inability to rouse, and bluish lips or face.
There remains little information known about the effect of coronavirus on Duchenne, but if a person with Duchenne were to contract coronavirus, multidisciplinary care including neurology, pulmonology, and infectious disease, and many others would be required. If you are concerned that you or someone you care for with Duchenne has contracted coronavirus, please contact your medical team for guidance specific to your circumstances.
Please know that PPMD continues to monitor coronavirus developments closely and is in regular communication with the CDC and Duchenne physician community. We recognize that an outbreak like this is scary, and we are working tirelessly to provide accurate, up to date recommendations for families. Please keep an eye out for additional information from both PPMD and CDC as it becomes available.
Future PPMD Meetings
While there remains much unknown about coronavirus, we do know that it can spread rapidly and be incredibly dangerous for at-risk populations. With this in mind, we have made the following modifications to our current event schedule:
- Atlanta, GA – End Duchenne Tour stop, March 9: Being held remotely
- Milwaukee, WI – End Duchenne Tour stop, April 18: Rescheduled (date TBD)
- New York City, NY – Duchenne and the Brain Care Meeting: Rescheduled (date TBD)
- St. Louis, MO – End Duchenne Tour stop, May 9: To be determined
- Scottsdale, AZ – PPMD’s Annual Conference, June 25-27: Happening as planned as of now. At this time, we are hopeful that the coronavirus will be contained by this year’s Conference at the end of June, but we will keep you updated on any changes to our plans. Once we open Conference registration, we recommend that you register for the Conference and explore booking your travel needs to ensure your space is reserved. If the situation changes, all PPMD registration fees will be fully refundable. Many airlines are also offering deals for newly booked flights, where changes or cancellations can be made within a specific timeline (please look at each airline policy closely to see what applies for you).
PPMD will continue to reach out to experts in our community and heed the advice of federal agencies like the CDC as we make determinations about future events.
We are grateful for this community of Duchenne caregivers, clinicians, and advocates, and will continue to keep you up to date with any changes or recommendations as they emerge. Thank you for trusting us to be a source of reliable information during this time where much is unknown. We are happy to partner with you.
All the best,
The PPMD Team
