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 LetterWe 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.
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?
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.
Hello Noel I have HED and wanted to mention that my normal core temp is lower than average. It’s 35.5C and the average base line is 37C . I have to allert medical practices if my core is 37.5C as generally see that as ok but infact I’m up 2 degrees which is getting into fever levels.
I’m unfortunate that I don’t sweat at all and have a high seceptability to nose throat and lung infections.
I have held of from having the vaccine due to concerns around my core temp and possibly suffering badly from potential covid vaccine side effects.
My granddaughter has heart condition with her ED should she get the vaccination?
Hello, Tracy. We encourage you to share the information from the blog and discuss the vaccine with her doctor.
nice job, thanks for sharing this informative info
Hi i am 43 years old. I have ED. I have an elevated core temp, around 99.4 degrees and even if i do small exertions, my temp raises a bit more. Even sleeping under the covers raises my temp a bit. I often push myself while hiking and exercising. I’ve never had the flu or any other cold or respiratory ailments. I got an award for never missing a day of school until highschool, when I deliberately skipped… I’m assuming my elevated body temperature is keeping out the contagions? I just read about how sauna can create heat shock proteins in the body that help immune defense. As well as never getting sick, i also still look function like i’m in my 20’s. Of course I don’t do sauna, but I have been wondering for years if my crazy good immune system is a result of my elevated body temp. Anyone else with ED never get sick?
Hi, Craig. We’re happy that you have a strong immune system. It certainly is possible there are other individuals who also have strong immune systems, however, this information has not been captured. We tend to see a higher incidence of respiratory illnesses. The linings of the nose, larynx, trachea, and lungs are moistened by various glands, some of which may be defective in ectodermal dysplasias. Please contact our office at info@nfed.org or 618-566-2020 with any questions.
Kelley
NFED, Director, Family and Community Programs