March 2020 

Dear ULF Community, 

On behalf of the Board of Directors, Medical and Scientific Advisory Board, and the staff of the ULF, please know that we are following the developments of COVID-19 and feel the concerns of our community. At this time, all we can offer is advice on staying healthy and safe during this scary situation. 

Individuals with leukodystrophy may have an increased risk of developing severe complications from respiratory illnesses associated with fever. As a result, these patients may be considered high risk individuals with regard to respiratory illnesses such as Influenza and COVID-19. In view of recent concerns expressed by families, the following is recommended for individuals with these medical conditions, based on currently available information. 

Remember to stay calm and do not panic. The chance of catching a cold or the flu is higher than the chance of catching COVID-19 at this time. Precautions for protecting yourself and your loved ones from Covid-19 are similar to those for Influenza: 

· Keep your hands clean by washing with soap and water for at least 20 seconds (long enough to sing the ABC song twice). Use hand sanitizer if soap and water are not available. 

· Avoid touching your eyes, nose, and mouth. 

· Cover your mouth and nose with your elbow or a tissue when you cough and sneeze to keep germs from spreading to others. 

· Clean and disinfect high-touch surfaces like door knobs, remote controls, and countertops regularly. 

· Avoid close contact with people who are sick. 

· Stay home if you are sick. If you have fever, or respiratory symptoms including cough and shortness of breath, do not go to school/work/social events. 

· Avoid crowded places such as busy shopping malls, church, and travel on planes or cruise ships. This may require rescheduling planned trips or events for the immediate future. High risk children may need to be kept home from school to prevent exposure if there is concern of infection within their school. 

· If you or your child has cold or flu symptoms, call ahead to your doctor for instructions regarding whether to present to the office or emergency department based on symptoms and other precautions in place. 

Please rely on your primary health care providers to seek treatment or advice if you are not feeling well. They are your best resource in staying healthy. 

You can also visit the Centers for Disease Control webpage for COVID-19 to stay up to date on the latest in their recommended restrictions to prevent exposure and spread. 


The United Leukodystrophy Foundation

Scroll to Top