Updated: March 31, 2020

The coronavirus (COVID-19) is dominating the news the past few weeks as more cases are being reported around the world. We reached out to one of our medical advisers to ask whether individuals affected by ectodermal dysplasias have any special considerations to take in regard to the virus. Here’s what we learned about coronavirus and ectodermal dysplasias.

After careful review of the literature related to ectodermal dysplasias, respiratory disease and COVID-19, there is no available study to assess specific risks of COVID-19 in individuals affected by ectodermal dysplasia syndromes. 

Respiratory Concerns

The medical literature documents abnormalities of respiratory mucous production in individuals with hypohidrotic ectodermal dysplasia (HED), and perhaps other ectodermal dysplasias. 

Individuals with HED are about twice as likely as the general population to have symptoms compatible with asthma, and there are multiple reports in the literature of individuals with HED with recurrent pneumonia and/or bronchiectasis (inflammation and widening of bronchi and bronchioles). Therefore, there is likely an increased risk of more severe infection involving the lungs with COVID-19 infection in these individuals.  

Individuals with HED and immune deficiency (and anyone else with immunodeficiency) are at increased risk of more severe respiratory infection, including pneumonia, with COVID-19 as compared to the general population.

Those affected by HED and many other of the ectodermal dysplasias are known to be at increased risk of upper respiratory infection, otitis media (middle ear infections) and sinusitus with common respiratory infections, and are therefore more likely to have these upper respiratory infections as a result of COVID-19 infection.

Prevention and Treatment for Coronavirus and Ectodermal Dysplasia

At this point, in the United States, there is no specific recommendation for special treatment of patients with ectodermal dysplasias other than prudent recommendations to prevent acquisition of any respiratory illness: 

  • make sure you have received flu vaccine, unless medically contraindicated (rare);
  • wash hands frequently;
  • cover your cough (preferably in front of elbow, not hands). 

If you have been in contact with someone who has been diagnosed with COVID-19; if you have traveled to affected provinces in China or in contact with individuals who have recently returned from there, and you develop fever, cough sore throat, you should contact your health care provider. 

In this instance, please do not go to a medical facility without calling first, so they can reduce the potential risk of spread to others at the facility when you do arrive there.

For more information about COVID-19, visit the Centers for Disease Control and Prevention.

You can also learn more about coronavirus and ectodermal dysplasias by reading our blog on taking care of your high risk loved ones.

26 comments on “Coronavirus and Ectodermal Dysplasias”

  1. 1
    Lynne Ward on March 10, 2020

    I am 73 and have chronic bronchiectasis, if I get coronovirus I don’t want to be admitted to hospital, can I treat myself with oxygen at home?

    1. 2
      Jodi Edgar Reinhardt on March 11, 2020

      Hi, Lynne. Thanks for the question. We would recommend that you contact your physician with that question since he/she knows your medical history. They would be able to advise you on what’s the best treatment for you. ~ Jodi, NFED, Director, Marketing and Communications

    2. 3
      Brittany on March 14, 2020

      Lynne if you’re sick enough with COvID-19 to require hospitalization you’d likely need full ventilator support.

  2. 4
    Gerty Watkins on March 17, 2020

    I am 79 years old and have bronchiectasis,if l get Coronavirus can l treat myself?

    1. 5
      Jodi Edgar Reinhardt on March 18, 2020

      Hello, Gerty. That is a question you need to ask your physician. We don’t know your health history and do not provide specific treatment recommendations. ~ Jodi, NFED, Director, Marketing and Communications

  3. 6
    Sonja Wittlieb on March 18, 2020

    My daughter has HED but has not had trouble with respiratory issues in the past. She had many ear infections but only when she was before and around the age of 1 (now 15) Is she still considered at higher risk? Thank you

    1. 7
      jennifer young on March 18, 2020

      i would say yes just because of HED are more affected

    2. 8
      Jodi Edgar Reinhardt on March 18, 2020

      Hi, Sonja. Please see my note to Jennifer Young. We understand that within people who have HED there can be a wide range of experience of symptoms. That said, we cannot comment on any one individual. We simply shared what was found in research studies that people with have HED have respiratory issues that can place them in a higher risk category. We encourage all of our families to follow the CDC recommendations, be cautious and contact your doctor if you notice any symptoms. Take good care! ~ Jodi, NFED, Director, Marketing and Communications

  4. 9
    jennifer young on March 18, 2020

    My 4 year old daughter had HED and a history of pneumonia. is she on the higher risk side for covid 19?? prayers for all

    1. 10
      Jodi Edgar Reinhardt on March 18, 2020

      Hi, Jennifer. It’s hard for us to say what is true for any one individual. We can only share what we know about HED in general and that people affected by it can have issues with respiratory. Therefore, they would be at higher risk. It’s always wise to follow the CDC recommendations. If she shows symptoms, call your doctor. Take care! ~ Jodi, NFED, Director, Marketing and Communications

  5. 11
    Nicholle on March 18, 2020

    Quick Question, my husband is diagnosed HED and has been sick for 14+ days. The area we live in Texas absolutely refuses to test him. Says only if he has a fever! At what point can we get him tested?

  6. 12
    Paul conroy on March 19, 2020

    I was born with multicystic dyplasia will covid 19 affect me

    1. 13
      Jodi Edgar Reinhardt on March 23, 2020

      Hi, Paul. Our foundation only focuses on ectodermal dysplasias so are not familiar with your condition. We encourage you to contact your physician with your question. ~ Jodi, Director, Marketing and Communications

  7. 14
    Adele Hipsky on March 20, 2020

    I have a son age 14 yes old with HED . When he gets sick with a cold or virus we always end up using the nébulisér . He gets better but takes more time than his sister who is not affected . My question is should we immediately use the nébulisée if he was to contract covid19 .. I see that you keep saying ask your doctor but I assure you the doctor will not know since my son is the only one with this condition in his practice . I know more about this condition than any doctor we see.. IV stocked up on nébulisée meds to be ready in case … we are obviously social distancing .. seeing absolutely no one but everyone needs to go to the grocery store…

    1. 15
      Victoria on May 19, 2020

      What do I do when I know more than the drs … I’m afraid on how my son is going to react to a flu shot … I’m scared of losing my son …. now I want to keep him out of school and why is this not considered a disability being they are very high risk! I’m going to want to home school my son … trying to get extra help to be his caretaker

    2. 16
      Mary Fete on May 19, 2020

      HI Victoria,
      I understand your concern, this is a very challenging time for all of us. And I know mom’s are especially worried about their children. I think the best way for you to approach this is to talk to your child’s doctor and the school. They may have some resources for you. Also check out healthychildren.org and website nfed.org. There are a lot of resources for you. If it would be helpful to you, call our office we would love to speak to you. 618-566-2020. Please keep in touch with us and keep us posted on anything you learn. You maybe able to help others. We will get through this.. Mary, NFED Executive Director.

  8. 17
    Cyprian Katongo Jr on March 25, 2020

    Greetings to the all family at nfed!

    Thank you very much, Mary Fete. Ma,am, this has greatly been useful in understanding the impact of
    Covid-19, with regards to those who have ectodermal dysplasia. Myself, who has HED.

    I have been enlightened, to be more on the preventive side. Like many, affected. Living with ED or have loved ones living with it. Can find some comfort, even with such information.

    It’s better to know than being unaware of the risks of covid-19. With my country, Zambia. Having 12 confirmed covid-19 cases, such information shared above, will be put to good use for my health & my family.

    Thank you very much for your time, reading this. Infinite massive blessings & love, to all nfed members, their families, you & your family ma’am.

    1. 18
      Jodi Edgar Reinhardt on March 26, 2020

      Hi, Cyprian. We’re glad to hear that the information is useful for you! Blessings to you as well. ~ Jodi, NFED, Director, Marketing and Communications

  9. 19
    Megan Smith on March 29, 2020

    Hi! I am 36 and have Goltz syndrome. I am a bit nervous with COVID-19 out there and spreading like wildfire in my home state of Florida. Typically, I have noticed over the years that when, for example, my husband gets lightly ill, I get bronchitis or laryngitis, etc. It just always seems worse for me, so naturally, this has me a lot more on edge as I want to stay healthy for myself, my 6 year old son, husband, etc. Should I be letting my employer know more about my syndrome and that I really should be staying home?

  10. 20
    Shirley Tavares Bento on March 30, 2020

    Perdi com o contato com vcs, Giovana está bem, estamos em quarentena para preservar a sua saúde

    1. 21
      Jodi Edgar Reinhardt on March 31, 2020

      Thanks for letting us know that you are in good health and staying home! ~ Jodi, NFED, Director, Marketing and Communications

  11. 22
    Amber Pease on March 31, 2020

    I am a 32 year old long term care nurse and I was diagnosed with Clouston’s Syndrome when I was a baby. I have a history of pneumonia. I have been out of work since my mom has called in sheer hysteria that I am a nurse and I have Clouston’s during this time, causing me hysteria as well. I guess my question is, do I have reason to have a higher concern for myself and the potential severity of the illness? Thank you in advance for your response.

    1. 23
      Jodi Edgar Reinhardt on March 31, 2020

      Hi, Amber. Thanks for the question. Because this is a new virus, there are no studies to tell us how the coronavirus can impact Clouston syndrome. While we would not be able to tell you specifically about your case, I can share with you what Dr. Tim Fete from our Scientific Advisory Council shared with families on our Facebook live last night on the NFED page. If you are affected by a type of ectodermal dysplasia in which you have had a history of respiratory issues, you would likely want to be more cautious in terms of the coronavirus. It would likely place you in a higher risk category. I encourage you to go to our NFED Facebook page at https://www.facebook.com/NationalFoundationforEctodermalDysplasias/ to watch the full video. We encourage you to follow the CDC recommendations and call your physician should you develop any symptoms. I understand that as a nurse, staying at home for you, may be difficult. Thank you for all of your service to those in long term care. If you have any questions, give our office a call at 618-566-2020. ~ Jodi, NFED, Director, Marketing and Communications

  12. 24
    Lisa Byer on April 8, 2020

    Few years ago, I began to do a lot of research and came across HERBAL HEALTHPOINT (ww w. herbalhealthpoint. c om) and their COPD HERBAL TREATMENT. After seeing positive reviews from other patients, I quickly started on the treatment, i experienced significant reduction/decline in major symptoms, including the shortness of breath. Its been over 2 years since treatment, i live symptom free

    1. 25
      Mary Fete on April 8, 2020

      Hi Lisa,
      I am so happy that your COPD has improved.. that is wonderful!! I hope that you are taking good care of yourself during these challenging times. Mary, NFED Executive Director

  13. 26
    Therese on April 19, 2020

    Hejsan jag och min son har Ektodermal dysplasi. Min son drabbas lätt utav att få problem med luftvägarna “krupp”samt har vi nedsatt imunförsvar är vi i någon riskzon när det gäller corona viruset?

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