Coronavirus: Recommendations for Patient Families

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

Posted May 15, 2020

As a service to our community, the UMDF Scientific and Medical Advisory Board continues to monitor credible reports about COVID-19 illness and provide periodic updates. Recent news reports regarding the use of Vitamin D in those with vitamin D deficiency possibly lessening the severity of COVID-19 illness are preliminary and yet unproven. Measuring vitamin D levels (25-hydroxy D) is easy to perform and your provider can recommend the proper dose of vitamin D, if necessary.  Vitamin D can have adverse health effects if consumed in improper dosages.  The UMDF SMAB strongly suggests patients or caregivers discuss all medication or supplement additions or changes with their health care provider.

Posted April 30, 2020

We continue to answer the questions of our community about the coronavirus (COVID-19).  Our latest “Ask the Mito Doc” webcast, recorded on April 29, 2020, is now available on the UMDF YouTube channel.

Posted April 29, 2020

During these exceptional times with COVID-19 impacting communities worldwide, we recognize that families affected by mitochondrial disease may be particularly concerned. Now, more than ever, the NIH MINI Study is dedicated to understanding the effects of infection and immunity in individuals with mitochondrial disease.

We hope that everyone stays well during this stressful time. Unfortunately, some individuals with mitochondrial disease may become ill with COVID-19. In this circumstance, we would like to invite you to participate in the MINI Study remotely to possibly collect information and samples in coordination with your local care providers.  Participation is voluntary and at no cost to you. If you choose to participate please contact us for more details.

While we cannot provide testing for COVID-19, we hope that the information and samples collected will help us better understand the effects of viral illness and immunity in people with mitochondrial disease.

Eventually, our goal is to impact the way infections are managed in individuals with mitochondrial disease to preserve health and improve well being. For information on how to become a remote participant in the study please contact us via email or phone as listed below.

On behalf of the MINI Study team at NIH, our thoughts are with you during this time.

MINI Study Team:
Dr. Peter J. McGuire
Dr. Eliza Gordon-Lipkin
Ms. Shannon Kruk
The NIH MINI Study
Phone: 301-451-9145

Posted:  April 7, 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.  Below are top five questions asked by our patient family community:

Are patients with severe symptoms of mitochondrial disease more susceptible to the COVID-19 virus than patients with milder symptoms? 

Fran Kendall
VMP Medical Practice
Atlanta, GA

Immunocompromised patients, meaning they have low immune globulin, are particularly at risk.  The second component of susceptibility is the degree of broad system problems.  Certain people are going to be more at risk for developing the severity of the disease, for example, those that may have respiratory compromise and those who have restrictive airway disease with muscle weakness. These patients don’t breathe as well as other people and are more at risk, along with those whose hydration status is always borderline or those who are tube fed or TPN dependent.  As a general rule, the more widespread and complex your problems are, the more you’re going to be at risk for more severe complications.

What should a patient, parent or caregiver do if they contract COVID-19?

Bruce Cohen, MD, FAAN
Akron Children’s Hospital

If a patient would get sick with a fever or cough, or any other symptoms, I would treat it initially as we would treat any flu.  Treatment would depend on what type of mitochondrial disease they have and what their symptoms are.  As an example, for patients with Leigh Syndrome, I am very aggressive getting them intravenous hydration in a hospital-type setting and making sure their ventilatory status and breathing is ok. This is the most critical aspect when a child with Leigh Syndrome gets flu like symptoms or even a bad cold; and it would be the same with coronavirus.  We basically know what to expect when someone gets the flu, and even that can be difficult, but we don’t know what to expect with the coronavirus.  With an adult patient who hasn’t had any medical problems related to ventilatory status, or the ability to hydrate themselves, it would be something that we may be able to handle over the phone and keep them out of the hospital.  A starting point, I would deal with COVID-19 as we would any other type of bad flu-like illness.

What is the risk to mitochondrial disease patients in regards to visitors coming to their home, e.g., health care workers, grocery delivery services, etc.?

Amy Goldstein, MD
Children’s Hospital of Philadelphia

This is the time you want to utilize any online services that are accessible to you.  Take extra care with packages that are delivered by wiping everything down that is coming into the house.  If something can be left for a few days, then leave it.  Have Clorox wipes handy and wipe down anything that comes into your home.  Masks are really helpful, especially if someone else is sick, where they are coughing and/or aerosolizing droplets that may have the virus on them.  In general, it’s really for other people’s protection; unfortunately, wearing a mask does not give you a whole lot of protection, unless it’s a N95 mask, which are in short supply at this point in time.  I would not recommend going out to a grocery store with a regular paper mask and thinking you would be safe and not contract the virus.

If a patient is scheduled for a medical appointment during this pandemic, should they keep it or reschedule, especially the patients that are traveling to see their physicians?

Sumit Parikh, MD
Cleveland Clinic

It depends on the hospital system and what they are allowing.  I have colleagues that are not permitted to have any face to face visits, unless it is emergent, and everything has to be done virtually.  In Cleveland, we have been given guidelines for screening.  Approximately 90 to 95% of our appointments are being done virtually, whether they are a new patient or a follow up.

What should patient families keep on hand during this time of social distancing and quarantine?

Fran Kendall
VMP Medical Practice
Atlanta, GA

It is recommended to have extra medication on hand.  There is an allowance for extra months of prescriptions.  This is in part to reduce the exposure and the number of times a patient has to leave their home for supplies.  For TPN dependent patients, some supplies have a shelf life that you must be aware of; however, there are certain things that do have an extended shelf life like extra tubes and clamps. Focus on critical supplies and medications.  If your child is formula dependent, make sure you have at least a one to two month supply.

Posted: April 6, 2020

United Mitochondrial Disease Foundation (UMDF), the NIH Metabolism, Infection and Immunity (MINI) Section invites patients and caregivers of individuals with mitochondrial disease to participate in an anonymous survey about the experience of individuals with mitochondrial disease during the COVID19 pandemic.

See additional details here.


Posted: April 3, 2020

The advice to stay well-hydrated or even mildly overhydrated has been a longstanding recommendation for those with mitochondrial disease battling a standard viral illness.  As with any person that has or may have COVID-19 the persistent cough or shortness of breath can be a symptom of more serious involvement and should be discussed with your medical provider.  The most serious lung condition that occurs with COVID-19 is acute respiratory distress syndrome (ARDS).  ARDS and other pulmonary conditions such as pneumonia and pneumonitis are often treated with medications that result in dehydration.  If your doctor is recommending ARDS-related medications or a reduction in the fluids being given, we suggest following that advice.


POSTED: March 16, 2020

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

Posted: 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.