Many of our communities have opened up to varying degrees during the past few weeks – and right at the time that summer temperatures are climbing. New safety measures for living in this COVID-19 world may bring extra challenges for people affected by ectodermal dysplasias. We have tips and resources to help you.
Don’t Sweat? Here’s What You Need to Know
Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.
Coronavirus and Ectodermal Dysplasias
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.
No Human is Limited!
Markus Kappen can’t sweat but hasn’t let that stop him from competing in triathlons. He says that you don’t choose your passion. Passion chooses you without you even noticing. In this inspirational story, he shares what he’s learned, the obstacles he overcame and what his next passion looks like.
Teen Advocate Wins Award
A teenager from Wisconsin captures national award for his courage to share his struggles with ectodermal dysplasias and create change.
First In Our Family
Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.
This is a Family Affair
Nikko is a lucky little boy whose family has rallied around him with love and support. Grandpa David and uncle Paul headed off to an NFED Family Conference in search of answers. They found those…and so much more. Find out what they learned and how they are giving back.
Be Cool to Oneself
Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.