Greetings from the National Foundation for Ectodermal Dysplasias (NFED)!

Whew! Things are changing by the day and the hour related to the coronavirus (COVID-19). I know you are worried about your children. The whole country is. But, I know your worries are a little different because your child affected by ectodermal dysplasia may be at greater risk for a worse respiratory illness or uncontrolled fever.

The best thing we can do right now is to be prepared and stay calm. And, yes, I need to tell myself that every morning, or every hour, depending on the news. Stay calm and prepared. That is the message.

Stay Home

For now, as the Center for Disease Control and Prevention (CDC) recommends, stay home. If you are in the United States, your kids are home from school, I am sure. They need to stay home. No malls, no gatherings and no play dates. Just you, your immediate family and your kids. 

If you stay home, it will greatly reduce your risk of contracting the virus. Very important: stay home with your immediate family. 

Be Prepared

I am sure you have stocked up on the needed food and supplies you need to meet your family’s needs. This should include fever control and any other needed medications, food and supplies.

Minimize your trips to the grocery store or other places. The best way to protect your children is to stay home! Use your good common sense that you always do when caring for your child. We want to minimize the stress to children, too, and believe me, they pick up on our stress.

Call Your Doctor

If your child is sick or you are sick, call your doctor right away. Ask their recommendations in regard to what you should do next and how you should proceed. We don’t recommend that you go to the doctor or hospital unannounced if you are sick. Call ahead.

Fever Control

You already know how to manage your child’s temperature. Our Cooling Guide has lots of useful information to help you. Monitor your child’s symptoms. Call your doctor if you are concerned at all.

Wash Skin and Moisturize 

Wash your hands frequently. We know that will lead to increased dry skin. You can manage the dry skin with these tips.

We’ll Manage Together

This is a challenging and fearful time. But, we will get through this and hopefully come out stronger by learning how to better manage a crisis or an infectious disease. Just do what you can to help flatten the curve and reduce the spread of COVID-19 – for you, your family, for all of us.

We’ll take this day by day. It might just be a wonderful time to enjoy our families.  Your NFED family is here, supporting you, supporting each other.

2 comments on “Taking Care of Your High Risk Loved Ones”

  1. 1
    Jeff on March 18, 2020

    Thanks for the advice & support. Since we lived in the States and our son was diagnosed we always turn to you for the best advice!!! My wife is stressing permanently about if our son contracts the Virus what the biggest threat will be. He has been extremely well managed and is now 16 & other than temperature issues most everything else is under control. The medical community in the UK say they can not give accurate advice on what the effects would be on our son as they don’t have the data. Are we right in assuming that the worst effects for him would be fever issues? His respiratory function is good & he is generally very fit, other than the ED of course.

    1. 2
      Jodi Edgar Reinhardt on March 18, 2020

      Hi, Jeff. You are welcome and thank you for the kind words. We know it’s a stressful time for everyone and especially for our families. We hear you! I want to be sure that you saw other other article we published on COVID-19 which you can find here: https://www.nfed.org/blog/coronovirus-and-ectodermal-dysplasias/. This article explains how some types of ectodermal dysplasias can cause issues with the immune system and respiratory system which would make some individuals at a higher risk. We don’t know your son, his health or medical history specifically so could not comment for his case. We would encourage you to follow the recommendations from the Center of Disease Control and Prevention at https://www.cdc.gov/coronavirus/2019-ncov/index.html. Perhaps the UK has a similar agency that you could consult. We encourage you to stay calm, watch for any symptoms and call your doctor should your son show any signs. It sounds like you are actively staying on top of this situation so should do well! Take good care! Jodi, NFED, Director, Marketing and Communication

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