We want to share with you additional recommendations from UMDF’s Scientific and Medical Advisory Board (SMAB) Chairman, Dr. Bruce Cohen:

As you know, the UMDF SMAB developed guidelines on the COVID-19 health crisis that were posted on this page. During the last few days, most US-based hospitals have entered their operations into “disaster mode” – which is reserved for major hurricanes, earthquakes or plane crashes.  The two differences that are obvious is that most disasters are local and short-lived.  COVID-19 disease is world-wide and will persist for months, if not longer.  There have been many lessons learned to date, both good and bad, from the events in China and Italy.  Firstly, community-wide social distancing seems to be effective at reducing the spread of the virus that causes COVID-19. We recommend checking the Centers for Disease Control (CDC) website daily for updates.  Most hospitals are also posting recommendations and links on their homepage, so using your personal hospital’s website as a source of information is another valuable option.

It is difficult to advise you on aspects of care involving “When should I see my doctor?” and “Should I come in for a routine appointment?”. I anticipate that most routine office visits will evolve into telemedicine visits, although there are HIPAA compliance hurdles to overcome.

The question remains:  What can I do for myself or my child with a mitochondrial disease before the virus hits?  Our recommendation is to double down on what we believe to be critical:

• Handwashing when entering the home and before any physical contact with each other, or touching your own face.  Handwashing with soap and hot water for 20 seconds is as effective as the alcohol-based products such as Purell.
• Even when feeling well, keep well-hydrated or even mildly overhydrated.  This is like keeping your car’s gas tank full in the winter.
• Keep abreast of nutrition. This is always a big problem in some children with mitochondrial disease, but do your best not to skip meals.
• Stay well-rested.  When in isolation, the tendency is to stay up late (to binge on Netflix or cartoons), but this creates an unhealthy pattern.

Please remember that these are meant to be general guidance for the mitochondrial disease patient community. You should always follow the directions of YOUR doctor who knows your specific situation best.

Bruce Cohen, MD, FAAN
Akron Childrens Hospital
Chair, UMDF – Scientific & Medical Advisory Board