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. With 36 years of experience, we are the leaders in providing information you can trust and use. You can find a ton of information on our website about symptoms, types, genetics and inheritance, how to treat the conditions and more. Our library is filled with articles and guides that provide more in-depth information on specific topics.
But the best place to learn the most about all of these topics is at our Family Conference. We are fortunate to have experts from our Scientific Advisory Council donate their time to provide workshops on ectodermal dysplasia treatment and talk with families one-one-one.
Ectodermal Dysplasia Treatment
Last year, for the first time, we videotaped several key workshops at the Conference. If you weren’t with us in Falls Church last July, you will want to watch all of these educational videos. Or, maybe you did attend, but would like to see a workshop you didn’t get to see. You can hear from our experts, see their presentations and learn. And the best part is that they are free! Yes, you read that right: free! All you have to do access the videos is join the NFED. If you are already a member, please update your profile and we will email you the link to watch them.
An Overview of the Ectodermal Dysplasias
You might want to start by watching this presentation by our favorite pediatrician, Dr. Timothy J. Fete. He provides an overview of the ectodermal dysplasias and discusses several different types. Dr. Fete also talks about the need for cooling for those who can’t sweat, immune function, and psychoeductional components. You will also learn about allergies, speech, ear, nose and throat issues, growth and nutrition. This is a great overview of the most common concerns families have.
To learn more detailed information about a particular type of ectodermal dysplasia treatment, you can watch a few of the other workshop videos.
Ectodermal Dysplasias: Dental Treatment Options for Children
One of the most popular questions we get is, “What dental care should I get for my child with ectodermal dysplasias?” Dr. J. Timothy Wright a pediatric dentist and distinguished professor who has been with the NFED for decades, answers that question. He leads a workshop on dental treatment options for children who are affected by ectodermal dysplasias. Learn about diagnostic issues, how ectodermal dysplasias can affect the teeth, issues to consider, treatment goals by age, and age appropriate treatment options.
Skin, Hair and Nails in the Ectodermal Dysplasias
If you are looking for answers on how to take treat your dermatology issues, watch this workshop video by pediatric dermatologist, Dr. Alanna F. Bree She presents information on how the skin, hair and nails are affected in various types of ectodermal dysplasias and what treatment options work best. Learn about eczema, dry skin, peeling skin at birth, skin erosions, lesions and more. Dr. Bree also talks about how the appearance of these issues affects quality of life and how affected individuals perceive themselves. She talks about loving the skin you are in. After describing hair effects, she addresses whether Rogaine works to grow hair and wig options. Finally, learn about the different ways your finger and toe nails can be affected and what you can do to keep them healthy.
Advocacy and Insurance
Are you looking for information on how to get your insurance company to provide health benefits for your dental care? Watch this video by NFED mom and co-chair of the NFED’s Family-Driven Legislative Advocacy Committee, Becky M. Abbott, M.P.H. Learn what steps to take to file a medical insurance claim for dental care associated with ectodermal dysplasias and what resources the NFED offers to help you. Becky also addresses the advocacy efforts the NFED is taking to get a law that guarantees health benefits for dental care and what families can do to participate in the process.
School Advocacy
School advocacy is another hot topic for families who have affected children. Watch this workshop given by Erin Hurley, M.Ed, a school counselor who presents information on how to advocate for your child in school. She is joined by her co-presenter, Kristin Matus-Kelso, who is the parent of a child affected by ectrodactyly-ectodermal dysplasias-clefting (EEC). Together, they give practical advice and suggestions on how to navigate the system to help assure that your child’s needs are met, including information on 504 plans and IEPs.
Family Panel on Ectodermal Dysplasias
This panel of experts learned about ectodermal dysplasias first hand. Individuals affected by ectodermal dysplasias and immediate family members share their stories and answer questions from audience members. Listen as they share their life experiences and what they have learned.
All of these videos have so much useful information about ectodermal dysplasias treatment to help you with your journey. Head on over to our website and join us to get access to them.
Thanks so much for impacting us with your knowledge and time you spend to do research we appreciate.
Thank you for your kind words. We truly love what we do here at the NFED! – Veronica