A Minnesota man born with a very rare condition that left him with no teeth and the inability to sweat has thrown himself into the world of fashion and gained newfound self-confidence.
Joe Tou Voua Lee, 23, was diagnosed at birth with ectodermal dysplasia, which causes the hair, teeth and nails to grow abnormally.
It means he has no teeth and poorly functioning sweat glands that prevent him from sweating even in the hottest temperatures.
Lee struggled with his confidence growing up and would insist on covering his mouth and dabbing water on his neck and shirt to make it look like he was sweating.
However, in his twenties, he decided to embrace his unique appearance by going into fashion, posting pictures on Instagram of him wearing various outfits.
Lee said the response he got was overwhelmingly positive, and his confidence grew, and says he wants to now inspire others to be comfortable with themselves and focus their energy on their passions rather than their physical appearances.
Joe Tou Voua Lee, 23, from Minnesota was born with ectodermal dysplasia. The rare condition prevents the sweat glands and teeth from forming properly
Lee said he would tried to hide that fact that he couldn’t sweat that he would ‘fake wet’ his neck and shirt. Pictured: Lee as a teenager
Ectodermal dysplasias are a group of more than 180 inherited disorders that involve defects in the hair, nails, sweat glands and teeth.
When a person has at least two types of abnormal ectodermal features – such as no teeth and poor functioning sweat glands like Lee – they are diagnosed with ectodermal dysplasia.
ED caused by a mutations to genes involved in the the development of the ectoderm, the outermost layer of cells or tissue of an early embryo.
The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others. Therefore, ED may cause these parts of the body to develop abnormally.
It is estimated to occur in 3.5 per 10,000 births, with less than 200,000 recorded cases in the US, according to the National Foundation for Ectodermal Dysplasias.
There is no cures for ED, but many treatments are available to address the symptoms such as special hair care formulas for lack of hair or dentures for lack of teeth.
Lee says his condition made him very self-conscious, resulting in difficulty making friends.
‘I’ve always tried my best to hide the fact that I have no teeth to everyone. I hated having the conversation that I didn’t have teeth,’ he said.
‘I also tried to hide that fact that I couldn’t sweat. If I was hot during gym, I would “fake” wet my neck and shirt to seem like I was sweating like everyone else.
‘Looking back, it was so stupid. I wish I was more comfortable with myself back then.’
Lee said he was very depressed until he began training for wrestling. Pictured: Lee in his wrestling days, far right
He quit six months into wrestling after training four days a week for two or three hours a day. But he discovered a newfound confidence that he translated into fashion. Pictured: Lee as a newborn, left, and as a child, right
Lee said he became depressed and didn’t see any talent in himself.
‘I wasn’t optimistic about any genuine interest, and I did not see any talent whatsoever in myself,’ he said. ‘I didn’t want to live on this world. I didn’t feel like I was from this world.’
However, when he reached his twenties, he discovered an interest in professional wrestling.
‘Before I actually signed up, I worked my a** off, lost fifty pounds and got into the best shape of my life,’ Lee said.
‘When I lost the weight and joined wrestling, my life and confidence just slowly grew and grew and became a little better.’
Lee says that his whole life was about wrestling – training four days a week for two or three hours a day – and that it was so all-consuming, he felt he had to stop as the scene wasn’t for him.
Lee now posts photos of himself in fashionable outfits, influenced by Korean pop music, on social media. He says the response has been overwhelmingly positive
He says he wants to encourage others with physical disabilities
This was when he had the confidence to explore fashion and decided to express his individuality on Instagram.
‘Unfortunately, six months into the training I realized that the professional wrestling scene just wasn’t for me,’ he said.
‘I am very grateful for the people I met and experience I had, but I had to find another path. That path was style and fashion.’
Lee began posting pictures of him on Instagram wearing various outfits and felt that the response he got was overwhelmingly positive.
‘Ever since high school I always had a weird quirky style influenced by [Korean pop music,’ Lee said.
‘I’ve always wanted to showcase that style online as well, but my self-esteem and confidence issues denied that direction.
‘My style is so weird now; I love literally all styles. However, with these posts, I really hope to inspire others with my genetic disorder or anyone with any physical disorders and insecurities that they can do anything they want to do.’