By J. Timothy Wright, DDS, MS How does one best diagnose and understand the clinical manifestations of an individual or family with an ectodermal dysplasia? Furthermore, what exactly is an ectodermal dysplasia? These questions have challenged affected individuals, clinicians and scientists for over 40 years. A decade ago, the National Foundation for Ectodermal Dysplasias (NFED) embarked…
My $35,000 (So Far) Smile
Cody Snell has paid $35,000 out of pocket – so far – to replace teeth he never had due to ectodermal dysplasia. At 33, he knows that amount will climb since he faces a lifetime of dental care costs. That is, unless the Ensuring Lasting Smiles Act is passed. He is advocating for this legislation to assure that he, his affected daughter and all families with his condition get the insurance coverage they need for their medically necessary care.
The Road Less Traveled
Priscilla and Ryan’s newborn baby struggled to feed in the neonatal intensive care unit. He just wouldn’t take a bottle and the family was frantic for answers as to why. The solution and ultimately an ectodermal dysplasia diagnosis came from their nurse, whose expertise was learned first-hand.
Breastfeeding Complications in Hypohidrotic Ectodermal Dysplasia
Many mothers desire to breastfeed their baby. But, for women affected by hypohidrotic ectodermal dysplasias, they may not be successful. Findings from a research study explain why the condition can impact your ability to breastfeed. Several women share their own personal experiences.
Dollars for Doers
Did you know that you could volunteer and the National Foundation for Ectodermal Dysplasias could get paid for your hours? Many companies across the U.S. are starting volunteer grant programs. Learn what you need to do.
ELSA Reintroduced in Congress
ELSA took another leap forward today! The Ensuring Lasting Smiles Act was introduced in the new U.S. Congress with bi-partisan support in both the House and the Senate. 28 organizations are now supporting the bill which will provide insurance coverage for medical and dental care due to congenital anomalies such as ectodermal dysplasia.
What’s going on at the NFED?
Find out what the National Foundation for Ectodermal Dysplasias recently published in research, will be announcing about the Ensuring Lasting Smiles Act and is planning for 2019.
Our Baby Struggled to Swallow
Baby Oakley had a hard time feeding. Watching your baby not be able to swallow can be terrifying. He had projectile vomiting and wasn’t gaining weight. His parents begged doctors to help their baby boy. A hospital stay and many tests later, they figured it out. This information coupled with a trip to the dentist led to a diagnosis of ectodermal dysplasias. Find out how Oakley is feeding now.