The world can be a pretty lonely place if you think that yours is the only family navigating the twists and turns of life with ectodermal dysplasia. But there’s no need to live on an island! There are plenty of ways to start making connections and building a network of love and support, including attending ectodermal dysplasia conferences.
8 Tips for Getting Your Child To Wear Dentures
We asked our families for their best advice. Here’s what they said. Bribery! Determine treats or prizes that the child would earn for wearing their dentures “x” amount of time each day. Increase the times until he or she is wearing them all day, every day. You could do a star chart if they are…
Finding Power in Telling Your Classmates About Ectodermal Dysplasias
It’s been a tough year in 5th grade for 10-year-old Josh. He’s been struggling internally about who he is and the condition he has, according to his mom, Chelsea Horan. Josh is affected by hypohidrotic ectodermal dysplasia, a rare genetic disorder. “Josh has been struggling a bit this year with talking to his peers who…
10 Tips for Family Conference First-Timers
Are you heading to Falls Church, Virginia, this summer to attend the National Foundation for Ectodermal Dysplasias Family Conference? Our veteran attendees have some great tips for you. Some of the best knowledge you gain is from the interaction with other families. Ask,ask,ask…anything! Write down all your questions so you don’t forget. Everyone is there…
‘Tis the Season – For Respiratory Illnesses
By Clayton Butcher, M.D. As an internal medicine and pediatric physician, I personally over the last two to four weeks have seen a significant increase in respiratory illnesses. They range from from viral upper respiratory infections, pneumonia, and good old fashion influenza. This season seems to be particularly severe. Many of our viruses including respiratory…
Post Traumatic Growth
A positive result can come out of experiencing trauma or difficulty and working through the resulting emotions. This is called post traumatic growth, or PTG. Learn how this applies to ectodermal dysplasia and how you can nurture it.
Tips for Finding a Doctor or Dentist
When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a…
If You Suspect Ectodermal Dysplasia
We know that you may have found the National Foundation for Ectodermal Dysplasias (NFED) after searching for your own or a loved one’s symptoms. If you suspect you or your loved one is affected by ectodermal dysplasia, the next step is to find a doctor who can formally diagnose you. Find a Doctor Contact…