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).

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