Navigating COVID-19

Coronavirus: Recommendations for Patients & Families

Last Updated: December 7, 2020

MitoAction is working diligently to keep our community safe and connected with vital updates related to the COVID-19 global outbreak.  We will continue to share recommendations from the CDC, NIH and other reputable sources to help you and your family remain safe and protected.

Summary of Recent Changes

Revisions were made on October 6, 2020 to reflect recent data supporting increased risk of severe illness from the virus that causes COVID-19 among adults with COVID-19 who have obesity, who have overweight, or who smoke or have a history of smoking. These revisions also make the document more explicit about data and implications for adults and for children. The listed underlying medical conditions in children were also revised to indicate that these conditions might increase risk to better reflect the quality of available data currently. This reflects the fact that there are less data available for children and does not imply that children are not at risk.

We are learning more about COVID-19 each day and will continue to provide updates on our website as new information relating to the safety of our community becomes available.  The most IMPORTANT thing we all can do is to abide by community-wide social distancing. This seems to be the most effective at reducing the spread of the virus that causes COVID-19.

Here are a number of vetted websites that have accurate and current information:

• National Institutes of Health (NIH)
• Centers for Disease Control (CDC)
• CDC – Are You at Higher Risk for Severe Illness?
• COVID-19 and the Rare Disease Community
• Facebook Coronavirus Information Center

We at MitoAction are getting many questions about ongoing care and how to maintain some sense of normalcy. As we are not giving medical advice, if you are experiencing any symptoms or have medical concerns, please CALL YOUR PRIMARY DOCTOR FIRST, BEFORE GOING TO THE OFFICE.  People with COVID-19 have had a wide range of symptoms reported – ranging from mild symptoms to severe illness.  These symptoms may appear 2-14 days after exposure to the virus:  fever, cough, shortness of breath or difficulty breathing, chills, repeated shaking with chills, muscle pain, headache, sore throat, new loss of taste or smell.  Be prepared to have telemedicine appointments and flexibility in your schedule.

Recommended Ways to Keep You and Your Family Safe:

• If you MUST leave your home, please remember not to touch your face and to wash your hands when returning home and before any physical contact with any person or surface.  If you live in a colder climate, please leave your OUTER CLOTHING at the door, and remove your shoes.  Using soap and hot water for 20 seconds is the most effective way to clean your hands and surfaces.  Utilize hand sanitizer when soap washing is not an option.
• If you do go out, maintain a safe distance from others (6ft) and wear your mask!  Avoid handshakes (use fist bumps, elbow bumps, etc.). Open doors with a closed fist or your hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on public restroom and other public doors.  Click here to purchase your custom MitoAction mask!
• Contact your physician to see if you can transition any upcoming appointments to a virtual appointment.  Some appointments will be medically necessary in person, but where possible, a telehealth appointment will help limit your exposure to others.
• For Mito patients it is critical at all times to stay well hydrated.  While you are staying home, maintain your fluid intake.  Staying in your routine is the best way to keep your body and mind in shape.
• Nutrition is also key for our community!  Eat healthy.  We all have our quarantine snacks, but try to resist the temptation to indulge before a healthy choice.
• Try to fill your prescriptions for 3 months or more so that you have enough medications to last you for a while.
• Again, stay in your routine:  Wake up at the usual time, and go to bed at your usual time.  If you are anxious or bored, try doing a new activity like coloring, playing physical board games, reading, teaching your pet a trick, cleaning.  If you need ideas, hop over to the MitoAction Facebook Page. We have people posting daily what they are doing to stay healthy and keep their families entertained.
• Stay connected.  Being self quarantined or practicing social distancing for extended periods of time can create feelings of loneliness and anxiety.  Reach out to family members and friends via phone, FaceTime or video chat so you don’t feel disconnected from others.

As always, these are recommendations only.  Please connect with your medical team if you have vital concerns about your health or you are experiencing unusual symptoms.

Joining us on our weekly support calls is a phenomenal way to connect with others and be reassured you aren’t alone during this.  We know that being indoors for extended periods of time can be isolating and lonely, and we want to ensure that MitoAction continues to provide ways to keep our community connected and engaged with one another.  For more details about our weekly support calls visit www.mitoaction.org/weeklysupport or call our Mito411 Support Line at 888-MITO-411.