New Year!

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.  

COVID-19

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.

COVID-19 Vaccinations

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.  

2 comments on “COVID-19 Vaccination and Ectodermal Dysplasias”

  1. 1
    Noel Moon on January 22, 2021

    Outside of geneticists and doctors associated with the NFED, medical providers have utilized information on the NFED website to educate themselves on HED in order to provide the best care for my child.

    Data submitted from study groups for COVID-19 vaccinations show .2% of vaccine recipients reported high fevers of 38.9 to 40°C (104°F) after the first injection and .8% reported high fevers after the second dose. Systemic Reactogenicity was less common with older adults, more common with younger adults. Safety, efficacy, and immune response data for children and immunocompromised groups is not available.

    1. When data for immunocompromised groups becomes available, will you please share it?
    2. In general, do people with HED get higher fevers than people who sweat for the same/similar ailments? Can you please include information regarding that possibility or lack thereof in your Covid-19 section?

    1. 2
      Kelley Atchison on January 25, 2021

      Hi, Noel. Thank you for your interest. We will post information as it becomes available to the Covid page on our website. Check out the NFED Library to access Cooling Tips. You can also contact our office at info@nfed.org with any questions.

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