Myhre Syndrome and Covid 19 - Tips from the PAB
No matter where you live in the world, all our Myhre families are impacted by the COVID-19 pandemic. Our Professional Advisory Board has the following words of advice to help Myhre families get through this difficult time.
1) What are the “Top 10 Tips” for staying safe?
Wash hands. Soap is best. Sanitizers work well, too.
Wash surfaces.
Avoid face touching.
Respect social distancing.
As needed, follow quarantine guidelines.
Take care of yourself, your family and friends.
Try to get as much sleep as possible (not easy for parents!)
If you haven’t had a flu vaccine, please contact your primary care doctor.
CDC suggests wearing a face mask
One more time, please wash hands.
2) What about treatments for the problems in Myhre syndrome?
The MSF PAB members are involved in caring for patients during this difficult time. Most are working at home using phone calls and video visits. To those who are on the front lines, we owe our gratitude. Some things to consider:
At present, there is no medicine we recommend to everyone.
At present, there is no medicine to avoid.
Many drugs are under investigation. We won’t mention any by name because they are changing. Studies are underway.
You may hear or read about a “Clinical Trial” which refers to a well-designed study to learn about the benefits (or drawbacks) of a drug. The PAB is following these closely.
3) Bored staying at home? What to do?
Make a plan.
Take a walk. Depending on where you live, this might be up and down the stairs, around the apartment building, on the street.
Try a workout video
Consider writing something for the future, maybe “How we experienced the COVID-19 epidemic as a Myhre syndrome community”