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.
Why Genetic Testing is Critical in HED
If you or someone you love is affected by hypohidrotic ectodermal dysplasia (HED), a doctor or dentist may have made the clinical diagnosis based on symptoms. Or, maybe HED runs in your family and you “just know” that you or your child have it. So, why would you want to get genetic testing to confirm the diagnosis? There are many benefits. But, most importantly because the first treatment for the X-linked recessive type of HED is being studied in a clinical trial.
Fever and Ectodermal Dysplasias
By Tim Fete, M.D., M.P.H. and Clayton Butcher, M.D. Fever and ectodermal dysplasia can be tricky for parents. Your child is running a temperature and acting a little lethargic. Is he getting sick? Or, is he overheated because he doesn’t sweat correctly? Should you treat the fever? Should you call your doctor? All of these…
Research Shows Effects of COVID-19 with Hypohidrotic Ectodermal Dysplasia
A team of researchers have published findings from the first longitudinal study of COVID-19 and HED. Find out what the risks and what they recommend to prevent them.
Navigating the Risk for Respiratory Problems in Ectodermal Dysplasias
While there is little published about respiratory problems in ectodermal dysplasias, there is evidence to suggest an increased risk. Learn about the risks, potential causes and recommendations for prevention and treatment.