Educating doctors and dentists has always been a part of our mission at the National Foundation for Ectodermal Dysplasias (NFED). Over the years, we have passed out information at booths at their annual conferences such as the American Academy of Dermatology. We have spoken to university students as a part of their educational curriculum. Our Scientific Advisory Council members talk one-on-one with other professionals.

One of the things we have found to be very effective is to host an educational symposium and grand rounds. If you are not familiar, the latter is a teaching tool educators in medicine use to present a medical problem and treatment of a particular person to a group of doctors, residents and medical students.

We often plan grand rounds in conjunction with a Family Conference we have in a given location. In the dermatology specialty, they present patients as part of this teaching event.

Planning Committee
Dr. Scott Norton, Dr. Robert Silverman, Dr. Elaine Siegfried and Mare Fete planned this successful Grand Rounds.

Our Planning Partners

We are grateful to dermatologist, Elaine Siegfried, M.D., from our Scientific Advisory Council for helping us plan a grand rounds to coincide with our 2017 Family Conference. She recruited Scott Norton, M.D., M.Ph., Chief of Dermatology at Children’s National Health System and Robert Silverman, M.D., FAAD of Pediatric Dermatology at Inova Children’s Hospital to our planning committee. Their leadership paved the way for a fantastic event!

More than 70 medical professionals attended the Grand Rounds on Thursday, July 20 at Inova Center for Personalized Health in Fairfax, Va. and earned continuing education credits. They listened to lectures on ectodermal dysplasias, dermatology, genetics and hand malformations. Attendees met with five families affected by ectodermal dysplasias and got to hear how ectodermal dysplasias affects each.

“It was one of our very best Grand Rounds, for attendance (including the majority of residents in the area) and content (including our first participating hand surgeon),” said Dr. Siegfried “Thanks to the volunteer patients for educating the health care professionals.”

Families who participated in Grand Rounds with Mary Fete
Five families participated in the Grand Rounds.

Families Step Up

We are grateful to our families:  Molly and Amy Leverenz; Jana and Christyn Luallen, Natalie and Ethan Kranig, Shannon and Erin Brown; Susan Gibbons; Dr. Jennifer Ryal; and Dr. Manuel, Juliana and Alexandra Armada. They were willing to sit in a room, have the doctors and residents parade in and out asking questions, looking at how the condition affects them and hearing their story. They all did a wonderful job!

They represented the following syndromes: ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome; ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome; hypohidrotic ectodermal dysplasia, focal dermal hypoplasia (Goltz); and incontinentia pigmeni.

Erin Brown, Susan Gibbons and participants
Erin Brown (second from right) sits on her grandma Susan Gibbon’s lap and showed residents and doctors how AEC syndrome affects her skin and nails.

“The doctors seemed very interested in learning about ectodermal dysplasias and the similarities and differences between them. They asked appropriate questions and we feel confident that we gave them useful information about the syndrome my daughter is affected by. My daughter felt comfortable talking to everyone. Overall, we felt helpful and enjoyed our experience.  – Shannon Brown

Christyn and Jana Luallen with a hand surgeon
Christyn Luallen shows a hand surgeon how Goltz syndrome affects her fingers and hands while her grandma, Jana watches.

Even teenager Christyn, who can be shy, was brave and willing to contribute.

“When Christyn asked if she would have to give blood or a skin biopsy during the Grand Rounds, Jodi (of the NFED) said no, it will just be like a show and tell.  Christyn looked at me and said ok, I will show but you have to tell, so that is how we started out.

She quickly saw how nice and how interested each of the doctors were in learning about her Goltz syndrome and soon was doing a lot of the telling herself. We are so thankful to the NFED for giving us the opportunity to educate the doctors so they can become more familiar with this rare syndrome.  – Jana Luallen

amy and Molly Levernz with Grand Rounds attendees
Amy and Molly Levernz (far right) share their story with hypohidrotic ectodermal dysplasia.

Nurse and NFED mom, Amy, understood the importance of educating the health professionals.

“For me, it was a great experience to be able to educate doctors, med students, and residents on ectodermal dysplasia. One of the biggest obstacles most parents face is diagnosis. The more people that know about these disorders, the easier it will be to get proper diagnosis in a timely manner. – Amy Leverenz

We thank the following doctors for sharing their expertise as speakers at the Grand Rounds: Nessa Aghazadeh, M.D.; Timothy J. Fete, M.D., M.P.H.; Emily Hattwick, M.D.; Yasmine Kirkorian, M.D.; Scott Norton, M.D., M.P.H.; Elaine Siegfried, M.D.; Cyndee DeKlotz, M.D.; Kaiane Habeshian, M.D.; and Pranoot Tanpaiboon, M.D.

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