COVID-19 Update from the Diamond Blackfan Anemia Registry

There is much to learn about the virus COVID-19 and we are learning more every day. It is spread person-to-person usually within 6 feet. The virus seems to be more serious for the elderly, individuals with impaired lung function and those with a weakened immune system. Your physician can aid you in assessing your or your child’s personal risk. As more information becomes available these recommendations will be supplemented. Above all, our advice is to not be frightened but to be careful and cautious.

If you are infected please keep the DBAR updated. We will inform the DBA Foundation if anything specific regarding COVID-19 and DBA emerges.

Some general guidance is provided below. For the most up to date information please consult:


  • Avoid shaking hands/kissing people. Avoid sharing food or drink. Avoid touching your eyes, nose and mouth.

  • Avoid close contact with people who are sick. In the general public one does not need to wear a mask unless in close quarters. N95 respirators should be for the medical professionals taking care of confirmed sick patients with COVID 19 infection.

  • Wash your hands with soap and water and/or use hand sanitizer when you can’t wash – the virus is killed with soap and water and alcohol products. Common surfaces such as desks, tables, doorknobs, handrails, shared toys or school supplies, airplane trays, etc. should be cleaned with a regular household cleaning spray or wiped prior to use. Don’t worry if you don’t have hand sanitizer or a disinfectant – regular soap and water work!!

  • As the weather is improving, open your windows and increase the ventilation in your home/workplace/school.

  • Limit the number of people in your surroundings – smaller meetings, no big family gatherings.

  • Avoid unnecessary travel.

  • Have a conversation with your hematologist to determine if you or your child have additional risk factors such as a weakened immune system, lung disease, etc.

  • Have enough of your medications at home.

  • Allow support from your family and friends – let them go out and get your groceries or pick up your medicines for you.

  • Stay social while social distancing – get on the phone, talk to your friends and family, send pictures and emails to each other, go on Facebook or twitter (if that is your thing), whatever – but STAY IN TOUCH!!!

  • Follow the recommendations of your local public health officials with regard to school attendance and attendance at other gatherings.

  • Stay positive - we will get through this!


DBA Specific Frequently Asked Questions


  • Does being on steroids put you at higher risk?

    • Being on high dose steroids definitely affects one’s ability to fight infections. However this is a difficult question to answer as everyone is on a different dose of steroids. The goal is to be on low dose steroids (less than 0.5 mg per kg per day and preferably taking them every other day or less). If this is the case, then you are probably not immune compromised. If you are on higher doses, then you may have some immune suppression. Some patients with DBA may have immune suppression for reasons other than the steroid dose.


  • What about the safety of the blood?

    • As per the American Association of Blood Banks: “In general, respiratory viruses are not known to be transmitted by blood transfusion, and there have been no reported cases of transfusion-transmitted coronavirus”.


  • If it's possible, should I isolate my family?

    • The best advice is to stay away people who are sick. This may mean working from home, avoiding places that may be crowded, and restricting visitors in your home.

  • Should I take the DBA patient's temperature every day?

    • The recommendation is to monitor your temperature twice a day for people who have returned from countries that had an outbreak of coronavirus and for people who have been exposed to a person with COVID-19. In general there is no recommendation to monitor the DBA patient’s temperature.