With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.
Aidan Abbott tells us about his journey as an advocate for himself and the Ensuring Lasting Smiles Act.
Jen Steele’s life was forever changed in 2012, when her daughter, Alli, was diagnosed with ectodermal dysplasia. Her family spent the next few years commuting 240 miles round trip to the University of Iowa to meet with geneticists, doctors and dentists. She discovered the National Foundation for Ectodermal Dysplasias (NFED) online and called for help and support. The Iowa mom quickly learned that Alli’s dental needs would exceed their financial abilities. She was not one to ask for help or be complacent and just accept the fact that their medical insurance would not cover Alli’s medical needs. With no political experience, the Steele family joined other NFED families in taking action to advocate for the Ensuring Lasting Smiles Act.
The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.
A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.
By Lindsay Harris Hey NFED family! I have been asked to use my knowledge based in skin to offer you all some information about what SPF is and why it is important! As we all know, ectodermal dysplasia affects each of us differently. Not only do we have the unique issues that ectodermal dysplasias present, but…
Charley Richter has attended 27 NFED National Family Conferences and Anil and Sean Vora have both attended 25. How close are you to reaching them? We will recognize our “repeat offenders” during Wednesday’s opening session. If you have attended at least five conferences, be prepared to be recognized!