We welcome 2021 with great optimism. We hope that your New Year is off to a great start and that everyone is staying safe at home and enjoying time with family.
This past year has been difficult on us all and we are still in the middle of this pandemic. We have to remain to be very careful. Hopefully, we can see the light at the end of the tunnel.
We really don’t know the effects of COVID-19 on individuals with ectodermal dysplasias. It is apparent that those with a suppressed immune system and respiratory issues are at greater risk of contracting a more severe infection. Please check out the information we have shared about COVID-19.
This information will give you tips and insights on how to stay safe during these uncertain times. Our recommendation is to continue to follow the Centers for Disease Control and Prevention (CDC) guidelines: wear face coverings when leaving the house or places of possible exposure; maintain a heightened alert on wiping down surfaces and keep washing hands.
I have received some questions about the vaccination. The best thing you can do is to discuss the vaccination with your primary care doctor. I am sharing with you a letter from the National Organization of Rare Disorders (NORD) to the CDC. This letter advocates that the rare disease community is placed in a priority vaccination group.Read NORD Letter
We strongly encourage you to talk with your personal physician to find out additional ways to stay safe, as well as, information about whether you should receive the vaccination and when the vaccination will be available for you.
We will get through this together. We need to stay strong as we move through this pandemic together. The support you have all shown, especially during these times, is remarkable.
Please continue to show your support in our Facebook groups. This is a space for everyone to voice their concerns, provide any insights or information that you come across in the coming weeks and months, and to connect with other families affected by ectodermal dysplasias.