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.
AEC Syndrome: What to Know If Your Baby is Affected
If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.
Check Out These Budget Friendly Webinars About Ectodermal Dysplasias
Are you ready to learn more about ectodermal dysplasias from our experts? Check out these affordable webinars you can attend right from the comfort of your couch. Plus, the meeting format lets you connect with other families.
What You Need To Know To Help Your Child’s Vision If They Have IP
Lacy Light shares her family’s experience and hard won wisdom from their fight for their daughter’s vision. This dedicated mom hopes to help other IP families with a new resource filled with tips and suggestions.