Coronavirus: Recommendations for Patient Families

UMDF is keeping our community connected during the coronavirus (COVID-19) pandemic.

Last Updated: March 25, 2020

On March 24, 2020, Doctors Bruce Cohen, Fran Kendall, Sumit Parikh and Amy Goldstein conducted a webcast for patient families and caregivers about the impact of the coronavirus.  You can watch the webcast on the UMDF YouTube channel here.

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 remain 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:

  1. 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.

  2. Even when feeling well, keep well – hydrated or even mildly overhydrated.  This is like keeping your car’s gas tank full in the winter.

  3. Keep abreast of nutrition – this is always a big problem in some children with mitochondrial disease, but do your best not to skip meals

  4. 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

Last Updated: March 2, 2020

You have no doubt heard about the situation with the coronavirus in the United States and abroad.  Because mitochondrial disease patients are medically compromised, the UMDF’s Scientific and Medical Advisory Board (SMAB) is providing these important recommendations for concerned patient families.

There is no vaccine for this strain of coronavirus (SARS-CoV-2), and although there are now massive efforts, development, testing and distribution of a safe and effective vaccine will occur over the course of many months and possibly a year.

Because there are asymptomatic carriers – meaning that you can actually carry the coronavirus (SARS-CoV-2) in your body, but never show signs of the infection, it makes sense to follow some simple recommendations to prevent spread of, or acquiring the disease. Most importantly, let your primary care physician know first if you are experiencing symptoms rather than going to the emergency room. In addition, the U.S. Centers for Disease Control recommends the following:

  • Avoid crowded public places during the flu season.

  • Wash your hands with soap and water for at least 20 seconds often during the day.  This is especially important after handling or touching surfaces or things where other people may have also touched them as well as after sneezing.

  • Avoid rubbing your eyes, nose or putting your fingers in your mouth.  Viruses can survive for many hours on surfaces you may touch, the virus can transfer to your fingers, then into your body when you touch your eyes, nose or mouth.

  • Teach your children and others around you to sneeze or cough into a tissue.  If they don’t have a tissue, then turn and sneeze into their elbow.  Viruses ride on small invisible drops of mucus from sneezes and coughs and then travel around the room to infect others.  Wash your hands with soap and water after sneezing.

  • You and your child are most contagious during the first few days of a respiratory illness.  Avoid going out where you may infect others and  be especially careful of other people in your home. Don’t drink out of the same glasses, wash your hands often, and keep away from those with infection.

  • Using a lot of cough and cold medications may not be helpful. A healthy diet, a multivitamin that includes zinc, and getting enough rest and exercise are important to prevent and treat viral respiratory infections.

If there are signs of illness (fever, cough, runny nose, body aches) then:

  • A young infant with a mitochondrial disease and a fever should always be seen by a doctor, even if it seems like they just have a cold, as it may be COVID-19 disease, or influenza, which needs to be treated with the same degree of concern as would COVID-19.

  • Until we know more, it makes sense to see a medical provider if the illness causes a high fever, or a fever that goes away and then comes back. These can be signs of a bacterial infection including pneumonia, ear infections, and sinus infections.

  • Any sign of difficult breathing, unusual noises with breathing, not being able to drink liquids, severe coughing, extreme tiredness or constant fussiness in an infant or child is serious and requires urgent medical evaluation. Again, this is true for the mitochondrial patient regardless of a coronavirus pandemic.

  • A parent or caregiver who is uncomfortable with the condition should be taken seriously and be encouraged to seek medical care.

  • Protective face masks may help, but do not completely protect you from getting a respiratory infection as air comes in around the mask. They also need to be replaced frequently, depending on the type of mask, at least daily

Additional considerations for patients with mitochondrial disease:

  • Drinking extra fluids every day, before you or your child gets sick, may keep you a few steps ahead of the worst symptoms if you should get ill.

Should you keep your children with mitochondrial disease home from school?

Be aware that relatively few children have been identified with COVID-19 disease, and so the impact on children with mitochondrial disease is unclear. If there are other family members attending school or attending a workplace in close proximity to other workers, keeping your child with a mitochondrial disease home from school may be giving you a false sense of security unless you practice effective handwashing and keep your other children away from the child with a mitochondrial disease.  Although strict quarantine may be protective, this seldom occurs in homes.

Protective face masks may help, but do not completely protect you from getting a respiratory infection as air comes in around the mask. They also need to be replaced frequently, depending on the type of mask, at least daily.

Read the complete UMDF Scientific and Medical Advisory Board Position Statement on the coronavirus here.
For additional resources from the U.S. Centers for Disease Control (CDC), click here.