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Overcoming Coronavirus with Ectodermal Dysplasia

1st April 2020

In these uncertain and isolated times, we very much need some positive news too. We want to share with you all how two German ED group members have recently recovered from COVID-19.

They both overcame the virus without any consequences and I think their stories are comforting and hopeful for our ED community…

I am a member of the German ED-Group (and mom to a little 3-year old with XLHED). Andrea Burk asked me to summarise and translate the first reports, that have been posted in our forum by members of our Group for Ectodermal Dysplasias, explaining how the Coronavirus affected them. Both cases went without severe symptoms or need of hospitalization.

1. Female, XLHED, 37 years old:

The Symptoms started on Wednesday with dizziness, nausea and general discomfort. They worsened after dinner, with vomiting and a fever of 38.5°C (101.3°F) which rose to 39.6°C (103.3°F) during the night. The fever started to go back down on Friday to 38.5°C (101.3°F) and subsided on the weekend. By then other symptoms started.

Those included severe headaches, diarrhoea and complete loss of sense of taste. Coughing didn’t start until Sunday, but still remains as the only symptom since then. Inhaling and drinking copious amounts of fluid seem to be helping with the cough.

She, as well as her husband, have tested positive for the COVID-19 since then. No hospitalisation was necessary. Both daughters (no ED) remained unaffected and her husband has already recovered completely.

2. Male, XLHED, 50 years old (affected by asthma only in very dusty surroundings or in hay-filled barns.)

It started with typical cold-like symptoms. Cold, shivers, fatigue, exhaustion and an overall achy body. The maximum temperature remained around 38.5°C (101.3°F).

He tested positive and immediately had to self-quarantine for 10 days, where he at first isolated himself from his family. After 3 days however, his wife and daughter started having similar symptoms to his and also tested positive for Covid-19. His son (no ED) remained free of symptoms.

From day 3 on, this person also experienced a changed sense of taste. On day 5 the before-mentioned symptoms started to subside. Headaches, shortness of breath after physical activities, as well as a dry cough remained. After 10 days all that is left, is a minor cough.

During the whole time breathing was never a problem for any of the family members. The quarantine has been lifted for the family now and everyone is well.

I hope you will find these two reports helpful.

All the best in these challenging times.

Julia Wappler