Living with Ectodermal Dysplasia
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Melanie, 26, is a successful international, high-fashion model with a unique appearance. She was born with a rare genetic disorder called ectodermal dysplasia, which affects the epidermal layer of the skin and therefore her hair, skin, nails, teeth and glands. She cannot sweat under her arms or produce a typical amount of tears or saliva. The condition also has impacted her vision, hearing and ability to breathe through her nose. Additionally, Melanie was born with a bilateral cleft lip and palate, which makes it difficult for her to eat and drink. Having undergone more than 30 surgeries by the age of 13, Melanie says she ultimately made a choice to accept her body and love herself just as she is.
“I didn’t want to live my life the way other people thought I should live life,” she says. “I wanted to be free.”
Ectodermal dysplasia is not a single disorder but rather a group of closely related conditions with more than 150 different syndromes. EDs affect the development or function of the teeth, hair, nails and sweat glands and can also affect skin, eyes, parts of the inner ear and other parts of the body. Each syndrome may involve a variety of symptoms that can range in severity, and individuals affected by EDs may require long term special needs treatments. Melanie has a combination of two ED syndromes, AEC and EEC.
Melanie says she had a difficult childhood, and many people thought she was intellectually disabled based on her appearance. She adds that she didn’t allow peoples’ comments to affect her, since she knew it wasn’t her fault.
“At the end of the day, I think part of what makes me successful is that I’m not afraid to be who I am, and I’m not afraid to look a certain way,” she says. “I just try to stay true to who I am.”
The condition has left Melanie with just three teeth in her mouth, and she has a fistula (an abnormal passageway in the body) in the roof of her mouth caused by the cleft palate. The Doctors send her to cosmetic dentist Dr. Bill Dorfman for a consultation.
Although Melanie is adamant that she does not want to undergo any procedures that would alter her appearance, she is receptive to the idea of closing the fistula in her mouth to keep food and liquids from ascending into her nasal cavity. Dr. Dorfman explains that his associate, oral and maxillofacial surgeon Dr. Steven Kupferman, has agreed to perform the fistula surgery and offers his own services to create a new set of removable teeth for her.
As a final surprise for Melanie, The Doctors introduce Kiera, a 9-year-old girl born with ED. Melanie says Kiera is the first person she has ever met with her condition and remarks that they actually look similar.
"This is the way that we're born; this is our body," Melanie says. "I think we should own it and enjoy it as much as we can."
- Web Exclusive: Melanie and Kiera chat backstage about their experiences living with ectodermal dysplasia.
After visiting Dr. Dorfman and Dr. Kupferman, Melanie decided to move forward with oral surgery. Watch as Dr. Dorfman and Dr. Kupferman perform the procedure and see Melanie reveal her new smile.