Mental wellness sounds like a catchphrase because we hear about it more often in the news and in our social feeds. We may even discuss it with the people around us, but really, mental wellness is about how we take care of the mass of synapses, memories, and experiences in our heads, and that can carry a lot of weight sometimes. Living with, caretaking for, and supporting loved ones with a rare condition like ectodermal dysplasia can be a challenge. Learn about a new resource to help you with your mental wellness.
No Fingerprints Can Be An Ectodermal Dysplasia Thing
Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.
14 THINGS YOU DIDN’T KNOW ABOUT ECTODERMAL DYSPLASIAS
Learn something new with our list of 14 things you didn’t know about ectodermal dysplasias!
Best Practices for Treating Your Ectodermal Dysplasia Teeth
You have many different treatment options for teeth affected by ectodermal dysplasia. It can be overwhelming to know what’s the best thing to do for you or your child. Learn from our dental experts which treatments to consider to achieve an age-appropriate dentition.
New Guide to Help With Your HED Baby’s First Year
We’re excited to share with our community a new guide to help families navigate the first year of life for their baby affected by hypohidrotic ectodermal dysplasia (HED). It’s a wonderful resource whether HED runs in your family or you’re brand new to the disorder.
Learning More About Papillomas and Goltz Syndrome
Ten-year-old Maximus Sessions just wants the papillomas on his fingers, toes and knees to go away. They feel bumpy, can be itchy and sometimes they break open and bleed. They are at the top of the list of things he doesn’t like about being affected by Goltz syndrome. Read our new article to learn what papillomas are and how to treat them.
Families Educate 50 Doctors and Students About Their Unique Ectodermal Dysplasias Symptoms
Learning about rare conditions like ectodermal dysplasias in a medical journal article or textbook is certainly valuable for medical professionals. But, getting to meet eight individuals with seven different types of ectodermal dysplasias all in one morning is a unique and extraordinary opportunity! More than 50 dermatology professionals at Saint Louis University got that chance thanks to our families.
Why Women Need to Know if They Carry the Gene Variant for XLHED
For the first time, women who have the gene variant for x-linked hypohidrotic ectodermal dysplasias (XLHED) have another option to consider when they are family planning. They can choose to participate in a clinical trial called EDELIFE where researchers are testing a potential therapy in-utero on male fetuses with the condition! Find out how the condition can be inherited and how you can learn if you are a carrier.