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

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*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).

6 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
    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. 4
      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. 5
    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. 6
    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.

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