Olivia Daniels has faced many challenges in her 22 years. She learned to channel her feelings and experiences into acts of service and kindness. She’s an amazing creative force for good! Find out how this pageant champion is using her platform to raise awareness of ectodermal dysplasias and serve others.
New Breastfeeding Resources for Women with Hypohidrotic Ectodermal Dysplasia
Hypohidrotic ectodermal dysplasia can affect a woman’s breast development. This, too, can impact her ability to breastfeed her child. Download our new resources to share with your doctor, nurses and lactation specialist and educate them. This will help your team prepare for how to help you!
Genetic Counseling Students Learn Empathy as NFED Volunteers
Two genetic counseling students gained a valuable education when they volunteered to help families with ectodermal dysplasias. Their work was a win-win for the NFED and for them.
I Wanna Ask Santa for Teeth
Seeing a friend’s teeth, 3-year-old Kannon decides he’ll ask Santa for the teeth he hasn’t developed. Dr. Karen McAndrew steps in to make his first denture and his wish come true.
Tips for Face Coverings and Lines
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.