How does COVID-19 impact individuals affected by ectodermal dysplasia? That’s the question we have been trying to help you navigate since the pandemic began. A team of researchers led by Verena Hennig just published the first findings of how COVID-19 affects individuals affected by hypohidrotic ectodermal dysplasia (HED). The Orphanet Journal of Rare Diseases published their study on September 3.*

The researchers suspected that people affected by HED would be more susceptible to COVID-19 because they often have “very dry mucous membranes in the upper respiratory tract and the eyes leading to disrupted epithelial barriers that could facilitate the entry of severe acute respiratory syndrome-coronovirus type 2 (SARS-CoV-2) into the body.”

They studied seven male and eight female individuals who had COVID-19 with hypohidrotic ectodermal dysplasia. In a long term study, they compared the course of illness, the immune response and the long term consequences of SARS-CoV-2 infection with a control group of individuals from the same age group.

Findings of COVID19 with Hypohidrotic Ectodermal Dysplasia

According to the article, “In 14 HED patients, mild or moderate typical COVID-19 symptoms were observed that lasted for 4–45 days. Fever during the first days sometimes required external cooling measures. The course of COVID-19 was similar to that in control subjects if patients developed antibodies blocking the SARS-CoV-2 spike protein. Five out of six HED patients with completely abrogated ectodysplasin A signalling (83%) suffered from chronic, in two cases very severe fatigue following COVID-19, while only 25% of HED patients with residual activity of this pathway and 21% of control subjects recovering from COVID-19 experienced postinfectious fatigue. Hair loss after COVID-19 was also more frequent among HED patients (64%) than in the control group (13%).”


Their recommendation based on these findings aligns what the NFED has been advocating: get the vaccine because you are at higher risk for the condition.

Read Research Article

Additional COVID-19 Resources

For more information about how to stay safe and informed about the coronavirus, check out our articles and webinars.

Explore Resources

*Hennig, V., Schuh, W., Neubert, A. et al. Increased risk of chronic fatigue and hair loss following COVID-19 in individuals with hypohidrotic ectodermal dysplasia. Orphanet J Rare Dis 16, 373 (2021).

9 comments on “Research Shows Effects of COVID-19 with Hypohidrotic Ectodermal Dysplasia”

  1. 1
    Mandy on October 20, 2021

    This study is nice, however, I see nothing here where vaccinated HED COVID sufferers were evaluated to see if the vaccine helped with any of the symptoms.

    I also don’t see anything about how the vaccines themselves may impact those with HED differently than others. I’m quite concerned about what is in those vaccines and how it may change DNA.
    How can we know that the vaccine is as effective for HED individuals as it is for others if that has not been studied?

    These are the questions I’d hope to have answered.

    1. 2
      Kelley Atchison on October 28, 2021

      Thank you for sharing your thoughts and concerns regarding COVID, the COVID Vaccine, and HED. At this time, no other studies in regards to COVID, the COVID Vaccine, and HED have been conducted. We simply do not know the answers to your specific questions. We encourage you to discuss your concerns with your doctor.

    2. 3
      Noel on August 3, 2022

      mRNA vaccines do not change reproductive DNA. But those who are worried about this and want to be vaccinated can talk to their medical professionals about the other types of covid vaccines.

      For mRNA vaccines, the “m” means messenger. MRNA basically help cells talk to each other to create a protein to protect the nucleus in your cell. If you think of your cell like an egg, there are layers protecting the yoke. A shell, and a protein (egg whites). mRNA just make sure your cells know they need to put up their protein barrier when covid comes. The reason this type of vaccine was made for covid-19 – covid has protein spikes on it that have been able to evade detection in the body and get inside the cells and basically cling to the nucleus like ice picks in snow.

      This article is telling us that people with HED lack the barrier defense. Hair and mucus trap and kill bacteria and viruses BEFORE they enter the body. The lack of hair and mucus in the respiratory system puts people with HED at higher risk of complications when exposed because they don’t have the first line of defense. Vaccines don’t replace the lack of a strong barrier in the respiratory system.

      The article references an immune response. Not all people with HED are blessed with the same immune system. The immune response won’t be the same for each person, vaccinated or unvaccinated. There are several different genetic variations that wind up with the diagnosis of HED. The genetic variation impacts the immune system and response. A geneticist is best to answer genetic questions. Not a PCP.

      Our PCP referred out to our geneticist who specializes in HED and our immunologist, who is better suited to determine immune system response to diseases.

      Not all covid vaccines are mRNA (this is the one people have heard change your DNA). Due to the lack of a barrier defense and how rare these diseases are, we have discovered that a geneticist who is an expert in studying Hypohydrotic Ectodermal Dysplasias will give you a way more accurate answer regarding the right care for you individually. We had a general geneticist involved one year and he said my daughter was a carrier with not near as bad of symptoms- and made that generalization based on the fact that 70% of females are carriers. The results of his generalized opinions were terrible. Genetic testing showed that my daughter’s particular mutation is pathogenic. After our experience, I would not recommend going to anyone but an expert in HED for the right care with treatment as complex and serious as this.

      Hopefully everyone has access to a geneticist who works with Hypohydrotic Ectodermal Dysplasias to help you. ♥️ A geneticist that works with the NFED is great to work with.

      We had both genetic testing done and thorough immune system testing done before making a decision- with a tiny partial dose of a vaccine administered in office with an hour of observation and thorough follow up, Our immunologist came to a conclusion based on lab results that didn’t include the missing barrier defense. The geneticist sent a letter to the immunologist based on the lack of the barrier defense- and the immunologist altered her opinion.

      Making decisions for care is complex. For us, we’ve discovered how important each doctor is in getting the right care.

      This article doesn’t give a mortality rate for people with HED. That would be helpful.

  2. 4
    Sam on October 29, 2021

    What are the long term side effects of catching Covid-19 with and with out vaccination for people with HED.
    Are their chances to conceive a healthy child reduced in either situation?

    1. 5
      Kelley Atchison on October 29, 2021

      COVID-19 and the COVID Vaccine affect each person differently. The CDC has published information on conception. Learn more at

  3. 6
    Evrett on November 27, 2021

    I appreciate this article. However, a study on COVID-19 and HED does not equate to a study on the COVID Vaccine and HED. That’s a massive scientific leap to recommend a vaccine to a group of people that the researchers just proved has an abnormal immune system.

    I work in a healthcare setting and paid for the FDA approved T-Cell immunity test and found out I already have full immunity to COVID. As someone with HED, I’ve had numerous adverse reactions to pain medications, topical steroids, and the flu vaccine.

  4. 7
    Mary Fete on November 28, 2021

    Thank you for your comments. It sounds like you have some unique circumstances. Please make sure that you discuss this with your primary care physician. She/he is in the best position to give you the information that you need and offer appropriate advice.

  5. 8
    Elaine Finein on July 26, 2022

    I was afraid to get the vaccine, My mom is 91 years old with bad lungs and heart. She was afraid for herself and my very healthy brother pressured me to get it. I gave in and my mom is very sorry she pressured me to get it for her. After the first shot I was in bed with a fever, severe headaches, my whole body hurt. I stayed in bed for almost 4 weeks. Again mom and brother pressured me and I got the 2nd shot. I was much sicker and in bed for 6 weeks. Several years before I got pneumonia and Dr.s told my family I was brain dead.

    1. 9
      Veronica Minard on July 29, 2022

      Elaine, I’m sorry to read you had challenges after receiving the COVID vaccine. The information in this article is specifically for folks who are affected by hypohidrotic ectodermal dysplasia, who have a higher risk for respiratory infections and were found to have increased risk for some severe COVID symptoms. We always recommend discussing your own health and risk factors with your doctor.

Leave a Reply

Your email address will not be published. Required fields are marked *