Ectodermal dysplasia is not a single disorder, but a group of syndromes all deriving from abnormalities of the ectodermal structures. More than 150 different syndromes have been identified.
Despite some of the syndromes having different genetic causes the symptoms are sometimes very similar. Diagnosis is usually by clinical observation often with the assistance of family medical histories so that it can be determined whether transmission is autosomal dominant or recessive.
Worldwide around 7,000 people have been diagnosed with an ectodermal dysplasia condition. Some ED conditions are only present in single family units and derive from very recent mutations. Ectodermal dysplasias can occur in any race but are much more prevalent in caucasians than any other group and especially in fair caucasians.
Ectodermal dysplasias are described as "heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair, teeth, nails, sweat glands, cranial-facial structure, digits and other parts of the body.
Melanie Gaydos was born with Ectodermal Dysplasia, a rare genetic disorder which causes abnormalities to hair, teeth and nails.
Talking about her symptons, Melanie explained: ‘Ectodermal Dysplasia means my pores are very small and I have very little body hair.’
She went on: ‘I only have three baby teeth at the moment… My baby teeth grew in and then they promptly started decaying.’
She explained: ‘I ended up meeting and starting a lot of my fashion work based off of Craigslist because there were a lot of fashion photographers on there who were looking for models who didn’t have a stereotypical look.’
Talking about her motivation for entering the world of modelling, Melanie explained: ‘I just started modelling as a means to learn more about myself – I never thought that it would journey into where it has today.’
But her career soon took off, and Melanie is now so popular that she works as an actress and model full time.
But although she’s now happy and successful, Melanie’s life wasn’t always so rosy.
She confided: ‘As a child I faced a lot of bullying and a lot of people stared at me.
She went on: ‘When I was about 16 I was really depressed and suicidal I didn’t really want to live – I didn’t think that I would be alive past the age of 18.’
Still, Melanie is keen to focus on the present and the future.
Talking about her glamorous life, she gushed: ‘Now I’m a full time model and actress and able to travel the world. I’m flown to different countries to do different projects it’s really amazing.’
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